Caregiving For Dementia

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.