Caregiving For Dementia

This is just an update of the family. 27 Months after losing Mommy!

This Episode is a continuation of what went on after Mommy was picked up.  

This is the first of a few episodes that goes through what you may feel right immediately after your loved one has passed away. There's not a whole lot to show notes with these episodes it's just me talking about what had happened immediately after Mama's death. What I thought would happen that didn't and that kind of thing. I hope these few episodes help you get along for a few months immediately following your loved one's death.

This episode is just a brief message to all those that are still downloading the podcast happy Thanksgiving to all.

Episode # 93 There comes a time in caregivers journey that they know time is very close to running out. We hear caregiving for dementia have realized that fact. The past five days Mama has not eat anything at all, the past four days Mama has not drank anything, and for the past three days Mama’s been very hard to wake up at all. When she is awake it’s about two minutes and she’s right back out. Mamas, breathing has also changed its no longer normal breathing. Doesn’t look the same, doesn’t sound the same as the normal breathing does Mama breeze through her mouth now and has for the past three days. And also she’s breathing through her mouth it’s not as loud as you would think it should be. If you listen to me anytime at all you know that we keep my older brother and his wife informed as to what mamas doing anytime something changes with Mama last night we had the hardest conversation the family can have. We talked about what to do when this journey is over. What to expect and what not to expect from Mama. From the people that we need to talk to when it’s done. What we want and what we don’t want as for his funeral arrangements. I guess I’m kind of lucky in this respect because my older brothers always told me that he married mom, meaning that his wife and mom think an awful lot alike and I know from my own standpoint I’ve had conversations with mom and turned around had same conversation with his wife and dam near had the same conversation and there was no way, absolutely no way that mom and his wife had talked. So now I find myself trying to come to grips with the fact of not having mom in the living room. Mama not be in there when I come home from the store. Not knowing exactly how to fill. All kind of emotions are floating through my head, my heart, and I’m sure that the same kind of things are going on with Stephanie and Michael I’m sure they have all kind of feelings running through their brains as well. Feeling helpless is probably my number one feeling right now. Not being able to help mom do anything at all.  Everything is changing so rapidly this week, although mom is still with us for now we are getting prepared for Mama’s last trip to West Virginia.  I’m not sure if there will be in episode next couple weeks I’ll have to play that by ear.

Episode #92 Show Notes There are so many things in life that normal people take for granted. This becomes more apparent the longer you take care of your loved one. There are things that I take for granted because there things that come natural to me that Mama can no longer do for herself. Mama can no longer wash her face, brush her hair, brush her teeth, or even talk. Mama tries so hard to talk to us and you can see the frustration in her face as she tries to say something and can’t. Mama tries to hold a cup of something to drink and because of her Parkinson’s she shakes so bad that some of whatever’s in the cup spills out. Mama so apologetic when she makes a mess. One of the things that I have taken for granted myself in my caregiving was the fact that when Mama was taking care of my grandmother who fortunately was not as bad as Mama is Mama never asked me to stay with grandma to help with grandma. I always had free time on my hands to do whatever I wanted to do. And I’ve forgotten that in my caregiving because we were leaving Michael with his grandmother way too much. We sought that it was good training for a after all he is old enough to have a child of his own. And until recently here we did not realize that Michael was having a troubled time taking care of his grandmother. And I’ve forgotten how much free time I had with my grandmother. A lot of times I’ll go out and check on Mama and mamas asleep, but there are other times where mamas really fidgety, and the only thing I can do is just sit there to chair and hold her hand. Tell her she’s okay, tell her that she’s safe, that I love her. A lot of the time in my own caregiving, I take for granted the fact that I can go brush my teeth, my mouth. Mama can no longer do that and here the other day I was trying to give her some ice water out of a spoon and this white flaky something another come out of her mouth. I asked Mama said Mama what is that and of course I didn’t get a straight answer, all I got the beat was mumbo-jumbo, come to find out what ever this crap was all through her mouth, was on her tongue, the roof of her mouth. Now I don’t have nerve enough to stick my fingers in my mother’s mouth! That’s just not going to happen. So I ended up taking a toothbrush and brushing her mouth her teeth, the roof of her mouth. So if your loved one stops eating check their mouth make sure this pasty crusty group is not in their mouth. Because it could stop them from eating could stop them from swallowing.

  In your caregiving a lot of times you do things in the heat of the moment. After time goes by you wonder whether or not what you did was the right thing to do. A lot of caregivers won’t tell you everything that they go through in their caregiving. I am one of those people who won’t tell you every little thing that goes on in in the house with the caregiving I am one that won’t tell you what Mama has done to us I won’t tell you what we’ve done to Mama. What I tried to do in this podcast is tell you what we do and what we don’t do because of dementia. When we first started caregiving we didn’t know what we were doing at all. I’ve gone out to Facebook to the caregiving support groups and I have found that a lot of posts in those groups are things that we have had questions about in our caregiving. So I try to take this podcast and tell you what we have done in that situation and what we haven’t been in that situation All to try to help you in your caregiving. I am also taking some courses in podcasting through the school of podcasting and you can find out at www.schoolofpodcasting.com and while taking these courses we have meetings every once in a while and in one of those meetings I had a lady asked me, if I had any regrets in my caregiving? Immediately the answer was no. If you hurt listen to me anytime at all you know that I have the attitude of I’m not doing anything for Mama that Mama didn’t do for me when I was a kid. So now I don’t have any regrets taking care Mama. There are times when Mama doesn’t want to eat or drink anything. That seems to of gotten worse for some reason this past week. We don’t know why all we do know is that there are times when we could get her Glucerna shakes down her when we couldn’t get her to eat anything but for some reason this week were having a lot of problems getting her to drink anything. We’re having to take a spoon and try to get her to take a sip out of the spoon. We’ll have to see how long that takes. If you don’t get anything down her and she doesn’t get her medicine the right way the right time. There comes a time in your caregiving where a lot of things don’t matter anymore. If the one that your caregiving for doesn’t eat or drink anything, there’s not a whole lot you can do about it. That would probably be my, if I had to pick a regret, in my caregiving that would probably be it, the fact that you can’t make them eat, you can put food in front of them, you can put drink in front of them, but you can’t make them drink, and that that would be my one regret the fact that I can’t force Mama to eat or drink although I may try you can’t force them to take anything in.

Care Giving for Dementia Know It All Doctors Episode # 90 While in your caregiving journey there will be a lot of things that happened that you don’t understand. I know when not when we first started there was a whole lot that went on that we didn’t understand there’s a whole lot that I haven’t gone into with this podcast that went on when Mama first got dementia. That’s one reason why I started this podcast. What is a post on Facebook was talking about talking to a loved one’s doctor who asked the question, why are you getting your mothers hair done? He was told because Mama used to get her hair done Mama feels better getting her hair done Mama likes getting her hair done. I’m here to tell you after dealing with this stuff for eight years or more there are times when my mother still knows what’s going on around her. She may not know exactly what it is or who it is or exactly what’s being said but she still knows that somebody stalking door she knows it’s something’s been said to her. Stephanie and I asked Mama if you want to go get her hair done this week and she said yes. So we made her hair appointment to go get her hair done but when it comes time to go Mama, decided she didn’t want to go she didn’t feel good she didn’t feel like getting dressed to go get her hair done. Now fortunately we’ve got it fixed to where the lady that does mom’s hair knows what what’s going on and so we can work within that couple hour window. But if Mama would’ve told us yes that within that two-hour window to go get her hair cut we do gone and I don’t care what the doctor would’ve said about it. If I stop for one minute it made mom feel better we to take her. I’m here to say you can’t tell me that the doctors know everything about this dementia. Because I’m here to tell you that they don’t have seen too many reactions good and bad for mom was conversations that have gone on with mom. For any doctor to ask the question why would you do something they had your loved one doesn’t know what’s going on is BS. If you to left every decision that you make four or about your loved one up to the doctors you would have a absolute living zombie on your hands. They’ve proven that to me and if I get mom all the medication that the doctor wanted to give mom mom would be a living zombie. All all they want to do is push pills that make him sleep all the time. Mama sleeps enough the way it is let alone with more medication to make her sleep. So I just said all that just to say the doctors don’t know what everything. Doctors may think they do but they are not God! They do not know everything and for some doctor to say they don’t know what’s going on around them just because they have dementia doesn’t know what he’s talking about I’ve seen too many changes to many expressions good and bad for my mother for any doctor to convince me that she doesn’t know what’s going on. So just make the right decision for you and your loved one and don’t worry a whole lot about whether or not to Dr. seems that think they know what’s going on because they do Mama has proven that to me and yours will to given the chance.

  v Care Giving for Dementia Trying to get your loved one to do what ever Episode # 89   There are times when you try to get your loved one to do something that they don’t want to do. When that happens the only thing that you can do is back off and give a little better time and try again you just need to keep trying until it works. There are times where your loved one doesn’t want to eat now here with Mama sometimes that’s three days. We usually are able to get her drinks down her but not always. Mama sometimes just takes these spells where she just doesn’t want to eat anything at all doesn’t want to drink anything at all, and most of the time she’ll let you know that she doesn’t want it. We have come to the understanding that these ensures, boost, and Glucerna drinks are meal within themselves so as long as we can get mamas Glucerna her, she’s okay. With taking a bath there are times that Mama doesn’t want to take a bath I have come to conclusion that this is part of dementia. A lot of times we have to bath mom whether or not she wants to take a bath. And a lot of times you have to back off and give her a little better time and go back to trying to give her a bath and she’s fine with a bath. As far as sleeping when Mama was first diagnosed with this dementia and at times it was a pain to get Mama to go to bed. The boy had to get up early in the morning and go to school when the wife had to get up and go to work in various things and Mama didn’t always want to go to bed when we went. I didn’t like going to bed and leaving her awake by yourself so I stayed up as late as she did and then I would lay down most of the time when she was down.v         Cowboy Theme Pacav 1711860633 is Royalty Free Music

Episode # 88 There are times when mama just seems to be staring out into space. There are times when mama doesn’t look at you but she looks through you. She doesn’t realize there’s anything going on around her. Over the Fourth of July weekend mamas great-granddaughter come to see her. Not mama seem to be fixated on the granddaughter but I’m not sure whether she realized it was her granddaughter or if she just realized that somebody different was in the house. Mama was not afraid of the granddaughter because she did allow the granddaughter to feed her some food, she did talk to the granddaughter, she did hold the granddaughter’s hand. Which I believe told us that mama was not afraid of the granddaughter. Mama was never one for the fireworks even before she got dementia now she would take us kids to see the fireworks are let us kids have fireworks at the house for the Fourth of July especially sparklers but that was back before the government said you couldn’t have a said the fireworks were dangerous. So mama didn’t even acknowledge the fact that the fireworks were on the TV this year the didn’t seem too upset her at all she didn’t react to them at all and didn’t seem to anyway. When mama first got her dementia I would always tell her that I love her I still do that today but I used to get on I love you too or a me too however I am no longer getting tighter those all I’m getting now is oh okay. There are times when I don’t even get that all I get is the blank stare. I understand that this dementia will eventually take everything away from mama. I’m wondering if this blank stare into space is part of the dementia taking everything away from mama. It’s a stare of almost looking through you instead of at you. When mama broke her hip the insurance company sent in some therapist in nurses and stuff and one of the therapists worked with mom’s legs and showed Stephanie and I how to do some exercises with mom’s legs and mama reacts to those exercises especially the lake that has the broken hip. Now I don’t think the exercises are actually hurting the hip however I do believe that they are making mama a little more uncomfortable because of mama’s reaction. I do believe that the blank stares or the stare into space is happening a little more frequent it last a little longer and it takes a little bit more to get a reaction out of mama than normal. However fortunately it doesn’t seem to last very long once we start moving mama around a little bed once we start talking to mom once we start Robin mama’s back mama comes to her self for lack of a better description. I have not been able to pinpoint any trickier that causes this blank stare. The stare is just there at any time and I have not been able to figure out anything that’s causing it nothing that mama does nothing that’s on the TV nothing that we do here to house so I’m not sure where the stare comes from it just appears out of nowhere for no reason.

Episode # 87 This week’s episode of caregiving for dementia was inspired by a Facebook group post someone said something about their siblings giving them a hard time about caregiving for their loved one. If you are the main caregiver for your loved one you are the one that is dealing with the aftereffects of your siblings coming to visit. If they are not around 24 seven 365 days a year like you are, if they are not sharing in the caregiving you’ll need to be able to tell your siblings to kiss your you know what, if they start trying to telling you what you need to do and what you don’t need to do. Mamma’s had six of us kids five of us are still living. Three of the five have just up and disappeared. They don’t call, they don’t write, and they definitely, definitely don’t come around to see mom. They have been gone for 5 or 6 years and if they were to show up today I don’t know that I’d would let them in the house. I’m not even sure I’d have a long drawn out conversation with any of them. Your siblings should have enough respect for you and for your loved one that they would not argue too awful much about what you’re doing and what you’re not doing. If your siblings don’t have enough respect for you or your loved one then you need to be able to put them in their place. After all you are the one that’s taking care of your loved one not them. The siblings would have a hard time forcing you to do anything other than what you’re doing, especially if you have a doctor’s letter saying that your loved one is incompetent. So believe me and my siblings showed up and started trying to tell me how to take care mom or how not to take care mom I would waste no time putting them in their place and if need be waive the doctor’s letter at them just let them know that the Dr. knows that she’s incompetent and that you know that the Dr. knows. When Mama divorced my stepfather the three siblings stayed with their father instead of living with mom and I. Now I’m not really going to whole lot of details here but they abandoned mom then. When the siblings decided that they wanted to go to college they knew where to go to get the help for college they knew that mom would help them any way that she could. Mama helped all three of them through college one she even helped with other bills and did without a lot of things and we didn’t do a lot of things when it was just mom and I in my 20s because the three of them were in school. They needed mom while they were in school. Now then that Mama needs them, and they have all, once again up and disappeared. Mama has two great grandkids that she’s never even laid eyes on. Mama is now so far gone that even if you brought the kids around Mama wouldn’t know them so Mama will never actually know those two great grandkids because their mother is not around. Before Mama got sick my sister would come down and see mom and take mom shopping and whatever else they wanted to do but when they got home,all  Mama wanted to do  in the evening was rest. When she wasn’t here she would call every evening and talk to mom for at least an hour or so. But since Mama has been diagnosed with this devastating disease of dementia none of them are around. Mama

  As your caregiving for someone and the longer it goes the more things go wrong. The more things do go wrong the more help you need. Toward the end of the school year it become apparent that we were going to need some help with mama, getting her from the bed to the pot getting her from the pot to bed getting them from the bed to the dinner table and so forth. This has never been more evident than when mama broke her hip somehow. Mama hasn’t been mobile for quite some time and now that she’s broken her hip it’s even worse mama no longer can set up by herself. This means that we have to do everything that involves moving mom ourselves. It’s already evident to us that were going to need some help so we made of call to Medicare and Medicare said talk to the doctor and get things set up. Well the things that the doctor has set up so far, is not what we need. We have a nurse that comes in we have a physical therapist that comes in we have an aide as well as a occupational therapist that has come into a valuate mom this week. Now the nurse the thing the nurses do is take mama’s vitals, the physical therapist showed us a few leg exercises that we could do with mom for mama’s legs, the just contend to help bath mom and to help dressed mom, and the occupational therapist just command to see what we got as far as equipment to help mom get around. The occupational therapist is really the only one really is much help mean she’s talking about another type of wheelchairs she’s talking about a hospital bed although with her experience she says that mama’s insurance is quite hard to get anything like that to go through. And we can’t afford to do it ourselves, so I am not sure what’s going on. We are just going to have to wait and see what goes on and go from there. Now when we called to get some help because stepping was going to go back to school in winner we actually need a physical body a physical person that can sit and help move mom around and talk to mom and all everyday things. With these four people that the doctor has got coming in their here about 20 minutes and that’s it that’s all they do and that’s not what Stephanie and I need, we need somebody that can actually take care mom while we go out and take care of other things that need to be taken care of. I mean hopes that when these three weeks are up for the nurses in the physical therapists that they will get together with mama’s doctor and just come up with a game plan for us to help mama out. I’m sure that we not going to get somebody 24 seven 365 days a year. Although that would be great I don’t look for the insurance company to offer or even paid for it. Mama doesn’t need a nurse however she does need 24 seven care and without mama needing a full-time nurse which mama doesn’t need I’m not sure that insurance company will pay for someone I hate typing I hate this is a episode number six who mama dialectics and develop and want you to you are interested in leading adherents Sunday that start taken studies all last theory to help sit with mom. We are running out of time before Stephanie has to go back to work very quickly. Where at the end of June and Stephanie has to go back to work at the end of August that’s only about 60 days 80 days may be to where we can get something or someone in place before she goes back to work. I’m hoping that we can do so but if we can’t, you heard me say before in his podcast that mama is not going to a nursing home. As long as I can possibly get to mama with any kind of reasonable strength mama will not see the inside of a nursing home. So will just have to wait and see what goes on between now and the time Stephanie has to go back to work, hoping for more than what I honestly think we’ll get but any help would be grateful.

Caregiving for Dementia 72 Hour Conversation Episode # 85 When Mama 1st got this dementia the doctor give her a lot of medication to take. A lot of it made Mama sleep. It made Mama pretty much a zombie. So I took half of it away from her. When I took half of the medication away from Mama, Mama woke up. Mama could function a little bit Mama was awake a little bit. Everything was fine. Although Mama still slept a good bit, until Mama broke her hip. When Mama broke her hip, I had asked the doctor for some help take care of her, so the insurance set out 4 or 5 different people to work with Mama couple nurses, a physical therapist, and an aide, and I don’t know who all else. The 1st person to come out, turned out to be a nurse and the 1st thing that she did was go through mamas medication. She found out that they all cause drowsiness. She even said that some of them were interacting with the others. So she took 3 or 4 more pills away from mom on top of everything that I took away. In 72 hours. I’ve had more conversation out of my mother that I’ve had a year or more. Although Mama still sleeps a good bit. She’s awake a lot more and were able to actually carry on a small conversation with her. You can actually make sense out of what she says. Now you still get a lot of jibber jabber, but you can make out enough to know what she’s talking about. This is one of the reasons why I don’t like nursing home very much. They just over medicate all of their patients, so the staff doesn’t have to deal with them. There are a lot easier to take care of. If there sleep in the art of their wake. I don’t know. I guess maybe I’m just abnormal I would rather have my mother awake and talking to me and have to duck from being it carry around scratches and pinch marks than to have Mama a zombie 24 hours a day 7 days a week 365 days a year. My brother and his wife come down yesterday to visit with Mama for a little while, and Mama actually wanted to get up, go to the dining room table. Drink a cup of milk and talk to them. My mother hasn’t done that, in I don’t know how long. That she didn’t stay long and she didn’t carry on any long extensive conversation, but you could understand enough to carry on a small conversation with Mama. So I’ve said all of this to say that if your loved one is sleeping more than you would like them to adjust their medication yourself. Talk to their doctor and let your doctor know, but the medication is what’s making them sleep, or at least in Mama’s case. So if you don’t want them sleep in 24 hours a day, 7 days a week. I’d say take half of the medication away from you could always give it back to woman. It’s too much for you, but at least it might wake him up a little bit you might have a little bit of conversation with them.

This week we know why Mama, is no longer able to set up from a lying down position on her own. We got up Sunday morning and put Mama on the pot when we got her there we notice that are left leg was swollen as big as a small basketball, and it was as hard as a brick. This prompted me to call mom is Dr. and explain what was going on. The doc said, take her to the emergency room. In the emergency room, They did a sonogram on Mama’s left leg and they found a blood clot that was old. They also took some x-rays of the left leg and that told them that Mama had somehow, someway broken her left hip. The only way that they’re able to fix a broken hip is surgery. So I talked to the rest of the family that has anything to do a mom, and we have decided that due to mamas age and mamas other physical problems we have decided not to do the surgery. We don’t think that Mama would come through the surgery to start with, let alone all the pain that surgery causes. The only reason to have the surgery would be so that Mama could walk or walk without a limp. The family decided that since the scene Mama didn’t walk. Anyway, the surgery would not do her any good. But now I’m sitting here second-guessing myself with the family decision not to go on with the surgery. Are we wrong not doing the surgery? I don’t know. That’s one of the good things about having family support behind you, you can go to them and have them help you make some major decisions. So you don’t feel like you’re out there all alone, making the decisions that could or could not help your loved one. As well as knowing that you’re not the only one that made that decision. It was a decision made by all of you, not just a decision that you made on your own. And knowing that you have that support from the family is a tremendous weight lifted off of one shoulders. One of the things that I did when I did bring Mama home from the hospital is I get a little bit of research on breaking one hip. Some people seem to think that it’s a death sentence to have a broken hip, but the majority of it is that if you move if you get to move it around to get the mobility back. It’s not a death sentence. A lot of people don’t move after a hip break it hurts too much soda don’t feel like moving. So they don’t move which is a major problem. We have started moving. Mamas legs just a little bit of the time, moving her knees back-and-forth so that she can stretch those legs out a little bit so that she doesn’t get to where she’s not totally immobilized we’ve got to work with her legs got to work with her knees to get her to move them to where she is able to stretch them out. She’ll need to stretch them out eventually. I think y’all know what I’m talking about their.

Getting Old with Dementia Episode # 83 The longer you take care of someone with a mental disease. The more problems you have. In the past 2 weeks, Mama has developed a few new problems, one of which is not being able to set up from a lying down position, all by herself. The longer I’m taking care mom, the harder it’s becoming to move her around. Now that she not only can’t set up. It’s also causing a problem with her standing up even though she has a hold on me. I’m finding out that I am not that it be able to pick her up, hold her up and do what I need to do after a bathroom trip, all by myself. The longer you take care of someone; it begins to dawn on you that there are just some things that you’re not going to be able to do all by yourself. It’s a lot easier to do some things with 2 or more people than it is with just one person doing it all. I find it much easier to move Mama around when someone else’s in the house. We started looking for someone to come help a few hours a week. We were able to find a lady from our church that was willing to come and sit with mom and help us out with mom. And we’ve had this lady for now, for about 6 months, but now this lady may have the opportunity to make a little more money than we can afford to pay her here. So we believe that were going to lose this lady due to financial needs. Fortunately, Stephanie only has 2 weeks of all of school left, so she’ll be here for 3 months or almost 3, to help me with mom. In the fall however, she’ll go back to work, which will leave me with mom once again, all by myself. I know how much easier it is to care of Mama with 2 people that it is one, so I contacted Medicare to see if I can get this lady’s time paid for. Unfortunately Medicare does not pay for a ny one caring for someone that is not certified in caregiving. However, Medicare did say to talk to mom is Dr. and have Mama’s Dr. set things up for in-home care giving, and then Medicare would take care of it from there. With that said, though, let me make it perfectly clear, I am not now nor will I ever plan to put Mama in a nursing home and if you have listened to this podcast for any length of time you know my feelings on nursing homes. Assisted living places may be a little better; however, that’s not an option either. I will take care Mama until Mama is gone If I have to crawl on my knees to do it. It’s just a lot easier with 2 people that it is one on one.

Episode # 82 This episode is about some feelings I have after reading some Facebook support group posts. Some news from a very old friend that reinforces the thought that dementia kills. I also asked the question whether or not we are taking care Mama correctly or not. A lot of times I get into the support groups on Facebook and the post that some people make often get me upset after reading them, because those post are sometimes nothing more than complaining about every day, normal things that happen when your caregiving for someone. Often times I forget the ones that are caregiving for someone else’s loved one. Although at the time, it does not stop me from getting upset. I’ve received some news from a very old friend that I haven’t talked to since I have been 17 years old that just reinforces the fact that dementia kills. I learned about 3 months ago that this friend’s mother had dementia unfortunately she lost her battle with dementia on Monday night. I reached out to the old friend and we had approximately and hours conversation. About her mom and how things were going with her dad, now that her mom had passed. While caregiving for someone, you always have in the back to your mind. The question is this right, in my taking care of this person correctly? Should I or shouldn’t I do this. These are questions that only you can answer as your taking care of the one that you're taking care of your the only one that knows whether or not it would be easier for you or easier for them with your decisions.

Caregiving for Dementia Trying New Things with Dementia Episode #81 When you try new things with somebody that has dementia, they don’t always react the way you think they will. It’s not an easy thing to do. In fact, it’s quite difficult because they are used to certain things. And when you change those things they get a little confused, standoffish, and sometimes even a little scared. After having several coffee cups broken, we decided to go get some plastic drinking cups for Mama. We got Mama used to these cups, which was no easy task. She got used to holding something hard and when we give her the plastic clear see-through cups and she grabbed them a little too hard and they would collapse almost to the point of being closed. Fortunately, we got Mama used to the plastic cups. Unfortunately, we ran out of the plastic cups this week so we give Mama back her coffee cups, and unfortunately, it was several days before we got the plastic cups again. So Mama got used to the hard cups once again, and when we got the plastic cups once again, Mama squeezed it a little bit too hard once again. Mama at times during the day will stare up in the ceiling and just go off. Now she’s talking to somebody about something, but we just don’t know what it is. I go over and try to talk tour try to calm her down a little bit, but unfortunately it seems like I’m not even there at times other time she just lays in the bed and stares out into space and I go over and try to talk to her, rubbing her back, hold her hands or something on that lines and I get the same reaction like I’m not even there. I’ve mentioned these to the Dr. and the doctor said that was just dementia. It seems like everything knew that mom is doing is just chalked up as dementia. And dementia is just chalked up to her being old. So I’m not really getting any good answers about any of this. I thought about changing doctors, but Mama chose this Dr. when Mama was Mama. Mama liked this Dr. and if I go changing doctors on Mama, it may do Mama more harm than good due to the new factor. Dementia is just terrible. It takes someone who is fearless and turns them into someone who’s scared of their own shadow at times. As a kid, I was told a story about my father buying a car that was a standard. The way the story goes is that daddy bought the car because it was a standard and he knew that Mama couldn’t drive a standard. So one day he went to work, and Mama Road into the town with him. When he got to his work, Mama told him she was going to take the car. He said you can’t do that you can’t drive this car. Mama said by the time you quit work all know how to drive it. So that fairness that Mama once had is now gone from Mama, due to dementia. Tonight. May 3, 2019. There will be a live Q&A for dementia on caregiving for dementia’s Facebook page. Come join us.

Dementia exercise is what we talk about this week. You see the lady that we have coming in from the church is not only sits with mom, but she also gets Mama fed and puts Mama is a chair with wheels on it and gets Mama to work her legs a little bit. I have seen a change in Mama the past month as we’ve had this lady for Mama, because this lady doesn’t let Mama sleep all day. This lady gets Mama up this lady gets Mama fed this lady gets Mama to work her legs a little bit. This is something that we don’t normally do we let Mama sleep the biggest part of the day. I’m hoping to get Mama outside this summer, not only to get Mama a little bit more exercise, but also to exercise myself because I’m getting just a small tummy. So I think that walking Mama around 8/10 of a mile circle hear from the house would help us both tremendously. Yesterday I walked about a mile and a half from the store back to the house and my legs are hurting from the walk. Because I haven’t walk ed all winter long. I think getting Mama out in this circle in front of the house would not only exercise mom, but it would do me some good as well. I can tell a difference in Mama since we’ve gotten this lady from the church to come in and sit with mom. We have been able to sleep on Tuesdays and Thursday nights for most of the night because of this lady working with Mama the entire time that she’s here.

In this episode # 79, , I talk a little bit about Easter When I was a kid. Easter is a holiday for the children. When I was a kid, one of the 1st signs of spring was Easter. One of the 1st signs of Easter was the fact that we were able to go out and get some dress close to where for Easter Sunday. I talk about Mama not remembering those times. The times when we were kids and we went out my front yard running colored eggs for Easter, the times where we all got candy for Easter Mama doesn’t remember any of that. One of the other things that really stick out is the fact that Easter is a Christianity holiday. It’s a holiday where Christians celebrate the resurrection of Jesus Christ from the dead. It used to be that whenever I wanted to know anything about the Bible or the church. I could go to Mama and say, Mama, what does this mean, what does that mean? And usually Mama knew right off the top of her head what things were. But with this devastating disease called, dementia, Mama can no longer do that. Mama no longer remembers the holidays and things of that sort. I literally had to look up on the web, the true meaning of Easter. But anytime we look up anything like that giving with religion on the web. We always look at our King James version of the Bible. To make sure the web says exactly what the Bible says. In years past, all would’ve had to done would’ve been gone to Mama. This dementia has taken all of mamas memories of not just the Easter holiday, but all of the holidays. Mama no longer remembers any holiday of the year she doesn’t remember doing anything that we did as kids she doesn’t remember anything much about anything. Dementia has turned my mother back into a child. I seen on Facebook. The other day a picture of 2 people holding onto a child below that picture was 2 people holding on to an older person and that made perfect sense, because that’s exactly what dementia does. When your kid you got mommy’s fingers in one hand daddy’s fingers in the other hand, trying to walk. As time goes on, we get older our parents get older and sometimes they get dementia and when that happens, they no longer have your hands, but you have their hands.

Once again this week I was on Facebook. I was in some of the caregiving for dementia support group’s, and I’ve got a few questions that I had answered and I thought I would just make an episode out of the questions. 1:33 – 4:40         The 1st question that I come upon was, someone had said something about getting their loved one in iPhone and iPad or an android. I wasn’t really sure why they were talking about it, but my advice to the writer was, don’t do that. Here in the house, Mama has times when she likes to throw things and if we were to get her something like that. Mama is not a very techie person, but if we were to get her something like that and she got into this mood where she would want to throw it. She would just throw it not realizing what it was or how expensive it was. You’re not only out the money of the gadget, but you’re also out the money for the contract that you have to have. Plus you would be out the money to get whatever it was fixed. So I suggested due to the fact of the expense not to get an iPhone, iPad, or android for this person. 4:40 – 8:00         Someone was talking about bringing their kids, or grandkids, or great grandkids, to see their loved one in a nursing home. I suggested to the writer to bring the children around as much as possible. You see, we now have a lady from our church come in and sit with mom of 2 days a week. There are times when this lady needs to bring her grandbaby with her, who is only about a year old. Mama seems to perk up, Mama seems to be more alert, more awake. Long story short, Mama seems to be more live with the child in the house. 8:00 – 10:52       I also suggested to the writer, though if the children were not able to come around, for the writer to get a baby doll about the size of a new born baby for their loved one to play with. It’ll also stimulate them to where they are more alive. 10:52 – 12:20     I’ve seen some film for Facebook, where people have give their loved one, a newborn size doll baby and their reaction to that doll, and now I’m not to put Mama on film for Facebook are you to be the one. I’ve been asked not to put Mama on any kind of film for anything other than just pictures. 13:30- 16:45       Question number 3 was from another caregiving support group page on Facebook and the question was whether or not someone with dementia actually heard what you were saying or not? My answer to this question was, yes they do hear you when you talk. I know every time we tell mom that we love her we get yeah, love you too, and sometimes we get. I love me too, and then she’ll laugh. So yeah they do hear you when you talk to them. They understand what you say. 16:45 – 21:01 question for from of support group page from Facebook was is it normal not to feel anything when a loved one that you been taking care of passes. I don’t know what to say here. I hope it’s not normal. I hope that I would feel something, but I know from the family that has taken care of someone there seems to be a double feeling sort of I guess yeah, there’s sadness their sorrow that there they’re gone, but there seems to be as well. A feeling of relief, relief because it’s a lot of pressure off with a off of you relief because it’s the blood loved one is not suffering anymore. But yeah, there’s still the sadness there they’re still the morning there. There’s still the sorrow there. My only advice that I was able to give in the Facebook group was that put 1 foot in front of the other take it day by day, moment by moment, because it gets easier as time goes on. So I’ve been told you never forget them, but it seems to get easier as time goes on to do things without them.21:02 – 29:00     I want to throw out a question to everybody, the question is would you like to see caregiving for dementia turn into a live Q&A? Do you think it would be a better show? Do you think it would be more of a help? Or would you rather just have me sit here and talk like I have done for the past to have years?

Getting some Help with your Caregiving Episode # 77 In this week’s episode, I talk a little bit about getting help with your caregiving, because after dealing with this disease for 7 almost 8 years now, I’m finding it very difficult to do everything by myself. We have ran on to a lady from our church who is willing to come in and sit with mom and help take care of mom. And Stephanie and I are really thrilled with the way she handles mom. This lady, not only helps mom to the bathroom, she gives mom a bath, dresses mom, and even takes a little bit of toothpaste on one of her fingers with a Playtex glove to brush mamas gums and tongue. She also fixes food and not just for mom, but for whoever’s in the house. We’ve had help in here before through an agency, but that become very expensive. Here in the DC area. They are $20 an hour and up, but they do not take care of mom, the way that this lady from the church does. They command and they would help mom go to the bathroom when necessary, but that was pretty much it. The rest of the time they would sit on their stuff and do nothing. If you had them do anything else. There was an extra charge for it. I think it will be a good thing to have this lady and from the church, not only to help out with mom, but I believe it’ll help me out, not only physically but mentally as well. It’ll give me time to get out of the house and go do something either around the house or actually leave the house to do some things that we been putting off for months, and some of the may even be for a couple of years. Having this lady command may even allow Stephanie and I do have date nights. Where we can go for dinner and a movie once in a while, which is something that we have not had for quite a while. If you’re able to get some help in whether that be someone from your church someone from your neighborhood a sibling or someone on that lines. It’ll be a tremendous help to you. It may even give you back a glimpse of your own life, even if it’s only for a couple of hours. I think that I will be able to get not only the physical break, I need, but I think I will also get a mental break, which may be more important even though I can get out a little bit with Michael and Stephanie here. I know how Michael and Stephanie are, and that leaves me. Still worrying about what’s going on here at house with mom. Having this lady for approximately 2 weeks, Stephanie and I just absolutely love the way she treats mom. I also think that having this lady help with Mama will be a good exercise for Mama, because it gives Mama a chance to get used to someone else dealing with her, besides myself and the family.

Not Understanding Dementia Episode # 76 This week’s episode, I talk a little bit about some of the things that I don’t understand about dementia. One of the things that I don’t understand is where dementia comes from 2 how you get dementia and 3 why does it act the way it does. It doesn’t seem that anyone knows exactly where or how you get this devastating disease of dementia. No one seems to know why it acts the way it does. There are some that say it’s connected to concussions, but the problem I have with that so far is the fact that, as far as I know. Mamas never had a concussion. So if dementia is connected to concussions why or how did mom get it. I also don’t understand the way it affects some people so quickly because at episode 46, I talk about your personal appearance, because I had gotten my haircut and shave my beard. Episode 46 is a recording of the reactions I got from mom. When I recorded episode 46 Mama was so happy that I cleaned up. She was happy she ran her fingers through my hair and I got a lot of goo goo gaga from her. Approximately 4 days ago I got totally 360° different reaction from her, when I got my haircut and shave my beard once again. This reaction that I received 4 days ago was a terrifying look she didn’t want anything to do with me. She didn’t want to talk to me. She didn’t want to have anything at all to do with me. She was absolutely terrified of me. I don’t have any real good explanations as to why she was so terrified, other than the fact that it was a quick and sudden change. I don’t believe she handle the quick and sudden change very well. I think she was very confused as to who I was, so that would explain the terrifying look that I getting for approximately 4 or 5 hours. I also don’t understand why for some reason, Mama is getting nightmares. You know when you have small children, your 1st reaction to a nightmare is to just put your child in the bed with you and let them go to sleep as you are comforting them and let them know that it’s all right. You can’t do that with an adult who has dementia that has nightmares. The only thing you can do an adult is just comfort them. The best you can sit with them hold their hand and love on them until they calmed down from their nightmare. They will eventually just fall asleep in their own bed. Medications are another thing that I don’t understand, When you have a child who’s on medication, you can somewhat force that child to take its medication. With an adult, you can’t force them to take their medication when they don’t want to take it. Trying to force them to take their medications is only going to upset them, which is going to upset you, which is going to upset them even more, and that’s not good for either one of you. The only thing you can do with their medication time is to take your time and if they don’t want to take it on time back off and come back in a little while and they will eventually take their medications. You may end up happening to do this several times in order for them to take their medication. These are just some of the areas that I do not understand why dementia acts the way it does. Mama never had nightmares before, Mama never had a problem taking medications before. These are some signs of the dementia getting a little worse. I believe. The only thing I can think to say is don’t lose your patience with them, which I know is easier said than done, been there done that. When you feel yourself losing it just walk away. They’ll be okay even if they’re on the pot they will be okay. Come back and just tell them you love them, calm them down, if you can, because one day sooner than you may think they may not be here to tell them that you love them. They may not be here to give you problems with their medication. They may not be here to wake up from a nightmare. So just  love on them as much as you can now, because one day they may not be here at all.

Mental Stress Episode # 75 In this episode, I talk a little bit about mental stress while caregiving for our loved one. There are a whole lot of things that goes on that I don’t share in the podcast. There may come a time when I’m able to do so, but as of right now I don’t feel comfortable sharing everything that goes on. There’s a lot of times when there is of good bit of back and forth between Stephanie and I, Michael and I, Stephanie and I and Michael that we don’t go into in the podcast. There’s a lot of things that Mama does and says that she would not do or say, if it were not for this devastating disease of dementia and there are times when you have to step back and catch your breath to where you can handle some of the things that are said and done that are quite hurtful at times I do not have any real good answers for anyone who’s dealing with stress while they are caregiving. My solution a whole lot of the time is getting on the computer. This is where I spend most of my time that I’m not caregiving for mom. I also honestly do not think that the doctors have very good answers, either, except to push pills. They don’t even seem to know where this dementia comes from, or even how you get it. You also have some mental stress when you 1st start taking care of a loved one with their medications, especially if you are on medication yourself for an issue. You worry about whether or not you’re giving them too much or not enough of their medications, but you work through it and you relax as time goes on.

In this episode, episode # 74 I’m a little bit all over the place with some things that I found on Facebook. I had joined some caregiving for dementia and Alzheimer’s support groups on Facebook. With being in those support groups, I have been able to come up with some really good content. One of those things that I’ve seen in these groups is someone had asked a question, If the medication that they were giving their loved one would help? With dealing with dementia for or the past 6, 7, 8 years, I can honestly say that the medication does not seem to help a whole lot other than the fact of making the one that you giving the medicine to sleep all day long. I would rather have mom awake a little bit and have a little bit of a hard time, then I would to have Mama sleep and be a zombie all the time. I also saw someone talking in the group about putting their what I believe their mother in a home. they were talking about their mothers dog having arthritis, and something about whether or not to let their mother in the room when they put the dog down or whether or not to go ahead and put the mother in the home before they put the dog down. Well I’m a dog lover. So I would not put the dog down simply because he has arthritis. I would not put the dog down simply because I was going to put my mother in a home. My advice to this person was to see if the home would not take the dog as well. I believe there are some nursing homes that will also take pets. I talk about our dog here Bucky. It seems to perk Mama up a little bit when Bucky comes around and is ready to play. The other thing I have noticed that seems to perk Mama up a little bit is the fact that our sitter that we have come in to sit with mom. When we have to go out is the fact that the sitter has a one year old grandchild that she brings with her and the baby seems to perk Mama up as well. But then I also talk about Michael coming home from work that seems to perk Mama up a little bit as well. There was also someone in this Facebook group that was talking about being harassed by members of the family. My advice to that person was simply, don’t answer the phone. If they’re not around to help you to give you support in any way shape or form. It’s really none of their business. How, where or what you do to take care of the one that your taking care of. I know in my instance I have 3 siblings that have just absolutely abandoned mom not once but twice and I’m not sure that I’d even let them in to see mom. Now after 6 years. Because it would just confuse mom, mom wouldn’t have no idea who they are or anything else. They haven’t been around to know what’s going on in the past 6, 7, 8 years. So why would I worry about what they say about how to take care mom. They haven’t been around. I really don’t care what they say. Sometimes you just have to tell them to kiss your you know what, and go on about your every day caregiving for the one that your caregiving for.

Care Giving for Dementia I will Episode 73 I come to you again this week with yet another poem from a Face book group that I had joined. The poem or saying that was posted was posted by Michelle DeSocio. The saying is as follows. I will When you forget I will remember for the both of us When you get lost I will find you When you are sad I will be sad with you When the fear comes I will comfort you When you cry I will dry your tears When you lash out at me I will not be angry When you repeat I will have patience When you forget my name I will understand When you can’t eat I will feed you When your legs fail I will carry you When you long for home I will be your safe place When your journey is ending I will be by your side I will love you for eternity I will I talk a good bit in the podcast about Mama being sad. She seems to be said so much. She cries out of the blue for absolutely no reason at all and I tell her, there’s no reason to cry. I do my best not to get angry when she lashes out at us, but I fail miserably at times. Mama has already forgotten my name and I do understand, although it does hurt. There are times when Mama can’t feed herself. Now I’m not sure if that is the dementia or if it’s her Parkinson’s, but there are times when she can’t feed herself and we do start to feed her and that she try so desperately to take over at times. Sometimes she can and sometimes she can’t. Mamas legs of already failed or she can no longer walk. She can barely stand up by herself, so we have to move her wherever she needs to go. And yes, Mama also is one that lingers for home, but I’m not sure if that is her thinking that she’s in a nursing home. Perhaps and she’s wanting to come back here to the house or is that she wants to go back to West Virginia, where she is originally from. I am not sure. I don’t even want to think about, mama’s journey ending. I don’t want to think about the day that Mama is no longer in the living room. No longer with us to tell her I love her, even after you she’s gone. I will love her for eternity. Just because they’re gone, you don’t stop loving them.

Care Giving for Dementia Episode # 72 Mistakes I talk a lot in this episode about mistakes in life and caregiving and mistakes in general. We all make mistakes and we will make mistakes and till death. This is just part of life and no one or anything will stop you from making mistakes, whether that be in life in general, or within your caregiving journey. I don’t know about you all, but I know that when caregiving journey is said and done, I will always ask myself, certain questions like, did I do everything I could for Mama, what did I do that we should not have done things like that. I’ve always been told that you should never do anything in haste. The decisions that you make in a haste are always the ones that you regret later on. I know when I go to buy a car. I have learned never to buy the car 1st time you look at it. I always end up regretting it. Every car bought in a haste I have regretted buying. In our caregiving journey. I know that there are mistakes that we’ve made. I know that there are things that we regret but you’ve got to do what’s best for you at times, whether or not everybody agrees with you. You’ve got to do what you need to do how you need to do it. There may be times when you have to tell somebody to kiss her, but and they may or may not be helping you in your caregiving journey, but they think they have the right to give their opinion on what you doing how you’re doing it, where you’re doing it. I talk about last week’s episode of this podcast. Not knowing whether or not I should of recorded data in the state that I was. I was really emotional with last week’s podcast because the poem. Don’t ask me to remember. Really got to me. Really bothered me because mom and I have such a close relationship and I know for fact that I’m losing her. I know that one of these days. Hopefully not very soon, but one of these days mom is going to be gone. I also talk about society and the fact that society does not learn from its mistakes. Case in point. Solomon and Gomorrah. From the Bible society has not learned from its mistakes in society. Web only will never learn from its mistakes causing changes on a dime. We also talked this week about whether or not it was a mistake to take some mamas medication away from her. Because of the agitation that she is been going through. I talk to her doctor about it. Nice light will give her this one medication back which will help with the agitation. Yes, this one particular medication has helped with the agitation, but it’s also taken some of Mama’s appetite away from her. I think. She seems to want to do nothing more than sleep now with this additional dose. Now, Mama sleeps good bit. Anyway, but I do believe that this additional dose of medication has made it the sleeping a little worse. I talk about whether or not it would be a mistake to mention patreon, as a way to possibly make a little bit of money on the podcast wondering whether or not it’s a mistake to me been mentioned wondering if it’ll upset some people that I’m even thinking about it. So I haven’t put it out there yet. I just made one up trying to decide whether or not it’s right to do. It may even be a mistake to mention it in the podcast. It may even be a mistake to mention it here and show notes. I guess I said all this just to say you going to make mistakes until death. We are human. No one is perfect. No one will get away without making some mistakes. Somewhere along in their life, whether that is a day-to-day thing or whether that will be in your caregiving journey you’re whether that will be in some other form. We all make mistakes. We all have to let our children at the proper time decide whether or not to drive on icy snowy wet roads. For me it’s a very hard thing to do to let Michael decide whether or not to drive on icy roads because I know what icy snowy roads can do to a car been there and done that. So the only thing I can say is that we supposed to learn from our mistakes, we are supposed to teach our children about our mistakes and hopefully they won’t make the same mistakes that we did, although they may. At the end of each day, Make sure your loved ones know you love them know that you hear form let your kids know that you love them every day. Let your one that your caregiving for know that you are there, for them.

Caregiving for Dementia Don’t ask me to Remember Episode # 71 One of the things I constantly hear from veteran podcasters is be where your audience is. The people that are listening to your podcast are hanging out in certain places such as Facebook, LinkedIn, that kind of thing. You need to be where they are. You need to be able to talk to them. You need to find out what they’re thinking what they ’re talking about what they have questions about. So this week I went and joined some caregiving for dementia support groups on Facebook. This week’s episode. Don’t ask me to remember is something that was shared by Sherrie Smith in one of the Facebook groups that I had joined. It reads as follows. Don’t ask me to remember. Do not try to make me understand. Let me rest and know you’re with me. Kiss my cheek and hold my hand. I’m confused beyond on your concept. I am sad, sick and lost. All I know is that I need you with me at all cost. Do not lose your patience with me. Do not scold or curse my crying. I can’t help the way I’m acting. Can’t be different though I try. Just remember that I need you. The best of me is gone. Please don’t fail to stand beside me. Love me tell my life is done. I found it very hard to read that on Facebook. I also had a hard time doing this podcast on this subject. Because, I too like Sherrie Smith, every time I read it. I think of mom. After reading this and working on the podcast. I give this poem to Michael and Stephanie to read. As I thought they didn’t take the saying or the poem the same way I did. Though they did read it, and they do seem to understand it. It just doesn’t seem to affect either one of them. The way did me. I guess that’s because mom is my Mama, and Mama will always be Mama. And I will always love her even after her life is done. Again, I'd like to give a big shout out to Sherrie Smith, who shared this poem, saying or whatever you would like to call it on Facebook. Thank you so much for sharing this.

I talked this week in a podcast about why society thinks it’s all right, just to put sick people, your loved ones that you are caring for in a long-term care facility. I talked to mom is Dr. and that was one of the things that he was talking about was putting her in a nursing home. I don’t understand why people are constantly asking, why mamas not in a nursing home ? She’s not in a nursing home because I refuse to put her in a nursing home and as long as I am physically and mentally capable of taking care of her. She will not see the inside of a nursing home. That’s not to mention the expense of a nursing home. I mean, were talking $10,000 a month. Not only that but nursing home will take care of her , the way I will. They’ll doper up some much to where she won’t even know whether it’s day or night out. The lever sit in wet and dirty diapers for Lord knows how long. So no, she will not see the inside of a nursing home. As long as I can take care. I’m not doing anything for Mama that Mama didn’t do for me when I was coming up. It’s my time to take care of Mama, instead of Mama take care of me. She’s take care me all her life. It’s my turn to take care of her. Mamas had a hard life. She married twice, once to an alcoholic and the 2nd one was just an SOB. I’m sure in those 2 marriages there were times when we were kids that she would’ve wanted to go out and couldn’t because she couldn’t afford a babysitter. There are time s when Stephanie, I would like to go out as well. However, the expensive in home care is, just like a babysitter was when we were coming up.

In this episode, I talk about things that I worry about. Things like whether or not mommy’s eats, whether or not were giving her the right medication, or even the fact whether or not the doctors are giving her too much medication. I also talk a little bit about worrying about the family being out in bad weather. Mama seems to be getting more and more agitated. She doesn’t always want to what we needed to do. I don’t know whether that’s because we’ve taken some of the medication away from her or if it’s because the dementia is getting worse. If we give her the medication the doctor wants us to give her. She sleeps all the time. I would prefer her to be up and awake and agitated and be able to talk. It’s not really talking to her. Then I would for her to be sleeping all the time. When your caregiving for someone you have to put that person ahead of everything else that you may be worried about, because they cannot take care of themselves. You need to worry about what they need more so than the other worries that you may have in your day-to-day life no matter what those consequences of not paying attention to those worries may be. I find myself worrying about the family being out on the street in bad weather, although, they are not children. That does not stop me from worried about them on the roads, when the roads are bad due to the weather. Sometimes you just have to let your kids learn by mistakes. I know when I was a little younger than Michael. My older brother tried to tell me how to drive on bad roads. I thinking I know better. I ended up tearing up a couple cars on bad roads in winter. Although I try to tell Michael about bad roads, there are times that we just need to let him learn for himself. I’ve said all this just to say that you could worry too much. Worry causes stress and stress may cause other physical problems. You can worry yourself to death. You can’t worry about every little thing. There may be things that you do need to worry about, but there are a whole lot more that you don’t need to worry about, in spite of the consequences of not worrying about those things.