Caregiving For Dementia

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.