Alzheimer's

[Muse]

A quick short back story on what I am writing here. Every year back home in Northern Maine we have an Acadian festival celebrating a French last name. My father's was in the 90ties and my mother's was in 2012 which i went up for. They always have a geneology book and I did get one. On the very first page of this large book it plainly stated in the 1700's( when we came over from France) that there was a village afflicted with a disease that no one had come across before. Research had pinpoint this to being Alzheimer's.

So basically it is with my family. My mom is coming down to visit with me for a nice visit. She is in VA now with my oldeer sister doing that there. We brought her down in January, my sister drove up in the storm to get her, so we can visit. My sister back home is trying to put her in a home and we both feel she is not there yet.

But she does have Alzheimer's and it is getting worse.

The point of this thread is simply. I have been with my mom for two weeks at a time a few times each year but this time it will be more extensive. She has already been up with my sister for five weeks when we go get her on Saturday. I need tips, suggestions, ideas and things that can help me help her.

I know to be patient with her for she is not doing this on purpose and doesn't mean to do the things she does. My sister in Maine has little patience to be blunt among other things. I have done what I know I can do as far as prepping the house and the family.

But any suggestions I would truly appreciate. My mom is the best. She grew up during the Depression along with her 14 siblings on a rural farm. She survived that, she has a 8th grade education but still managed to take care of us three girls when my dad died when I was five. She paided off the house, the car and took care of us with what little we had. There were days she wouldn't eat so we had food. I could go on but you get the point. In 2012 she lost her second husband and actually was the one who found him.

It was after this that we started noticing more how she was, not realizing what a great buffer our stepdad was to her.

I want to do the best I can while she is with me.


Thank you for reading and any help you can mention.

 

[Dwight Schrute]

I saw it first hand back when I was about 8.

My great grandmother had done very well for herself. Had a massive waterfront house in Harwich. We spent nearly all summer there for years both while she was alive and sfter she'd passed.

Her condition was REAL bad. All she could say was 3 questions:

What time is it?

Who are you?

Where am I?

Over and over and over and over....

I was 8. I didn't know how to handle that. So I spent the day in the driveway playing street hockey until I got too hot and then ran down to the ocean out back. Rinse. Repeat.



My dad goes for tests tomorrow...

 

[Muse]

I saw it first hand back when I was about 8.

My great grandmother had done very well for herself. Had a massive waterfront house in Harwich. We spent nearly all summer there for years both while she was alive and sfter she'd passed.

Her condition was REAL bad. All she could say was 3 questions:

What time is it?

Who are you?

Where am I?

Over and over and over and over....

I was 8. I didn't know how to handle that. So I spent the day in the driveway playing street hockey until I got too hot and then ran down to the ocean out back. Rinse. Repeat.



My dad goes for tests tomorrow...

It's been around me for my entire life, this aunt, that uncle and so on. As a child you have no clue or at least I didn't and we were told to go out and play or to be quiet. One day we talked on the phone three times. I had the same conversation three times. My sister back home said how do you do that, it would have driven me nuts. Easy. You just have the conversation three times, it's not her fault can't treat her like it is.

 

[Dwight Schrute]

Yeah. It's a bitch.

I remember her sitting at the table literally going through her 3 questions about 6 times in 5 minutes. Then she started to cry and slammed her 94 yr old hands on the table. I can't imagine the mental torture. That and Parkinson's. Two true evils.

 

[Muse]

Yeah. It's a bitch.

I remember her sitting at the table literally going through her 3 questions about 6 times in 5 minutes. Then she started to cry and slammed her 94 yr old hands on the table. I can't imagine the mental torture. That and Parkinson's. Two true evils.

Yep been there and unfortunatelely will be there again and again. She turns 78 in October and is strong like a bull. Hell she is healthier then me but that isn't the issue. That is well said the mental torture for she will say things like, "Why can't I remember?" to "I'm so stupid why can't I remember?" to "I feel like I'm going crazy."

That last one always kills me for I have no way of helping her when she says that but just talk her through it talk her down and work it out with her the best I can. So I am preparing my family here and telling them this is how it is for the next month to six weeks. Deal with it for it is not her fault. I sense I will be crying even more soon for my frustration at the crappiness of this. She has been through so much and now this and I just want to toss my hands in the air and go, "Really, you had to give her this?"

I hope it goes well with your father.

 

[Dwight Schrute]

Thank you.

She'll be all set with you having her back like this.

 

[BostonTim]

One thing that I remember reading somewhere (not sure where, and not sure if it's true) but:

It's not uncommon to hear cruel things about yourself come from the mouth of one you revere. When it does, it will hurt. You will feel hurt. Accompanying this comes (your) guilt. Why, you ask am I mad? am I hurt? It's not her fault. She can't help it. I'm a rotten person.

You have to first, be kind to yourself. Your first reactions to harsh words are primal, virtually automatic and not easily (if at all) controlled. Later you'll let your rational mind in at some point and you'll be ok.

It's ok to be hurt, it's ok to be mad. Just don't let yourself blame yourself. Make an effort to take better care of yourself when she is sleeping or occupied. Take baths, long walks, all that stuff.

If you don't take care of yourself, if you can't be kind to yourself you won't be able to do either with your mom.

Just thoughts, maybe even platitudes. But all the best. Enjoy her visit.


Cheers, BostonTim

 

[Muse]

One thing that I remember reading somewhere (not sure where, and not sure if it's true) but:

It's not uncommon to hear cruel things about yourself come from the mouth of one you revere. When it does, it will hurt. You will feel hurt. Accompanying this comes (your) guilt. Why, you ask am I mad? am I hurt? It's not her fault. She can't help it. I'm a rotten person.

You have to first, be kind to yourself. Your first reactions to harsh words are primal, virtually automatic and not easily (if at all) controlled. Later you'll let your rational mind in at some point and you'll be ok.

It's ok to be hurt, it's ok to be mad. Just don't let yourself blame yourself. Make an effort to take better care of yourself when she is sleeping or occupied. Take baths, long walks, all that stuff.

If you don't take care of yourself, if you can't be kind to yourself you won't be able to do either with your mom.

Just thoughts, maybe even platitudes. But all the best. Enjoy her visit.


Cheers, BostonTim

Well said shugs. I will need to remember this. I do have some upcoming heath procedures which I have moved around so you are right it is important that I remember not to forget me in the process but I'm a mom. It's what moms do. Thank you for your comment.

 

[PatsFanLisa]

I'm so sorry for both of you, Muse and DS. My mother doesn't have Alzeimer's, but she does have severe dementia, has had it for about five years now. To say that it's difficult is a massive understatement. I am overwhelmed on a daily basis. I take care of her and my father, 94 and 92 yrs old. My mother is difficult, stubborn, repetitive, and self-centered. I run around doing things for both of them seven days a week and am constantly stressed out.

So this might sound like I'm a b*tch. Six years ago, I had asked both of them to go to an assisted living facility...not a nursing home, but a lovely "apartment" in a facility where they would have activities, meals if they wanted them, a driver to take them to medical appointments, have their prescriptions filled - everything. It was brand new and it is a half mile from my home, so I could visit them regularly. I paid $6000 for a deposit, and at the last minute they refused to go and wanted to maintain their independence. You can't force your parents to do something, even if it's the right thing to do.

So you guessed it. Now they're too frail, sick and elderly to go to assisted living. I am their assisted living. I'm angry, I'm tired, I haven't had a vacation in years, and I can't go anywhere because they need constant care. I have hired people to come in and help me out, but my mother is so difficult that they leave within a matter of days. I've had to change my lifestyle drastically, and my husband, while he has been a great support and treated my parents as though they were his own, is up to his neck in it. We've already separated once, but we love each other and we try to maintain.

I have no advice for you, Muse. I have become bitter, though I know my mother can't help herself. I'm too old to be doing what I'm doing, my blood pressure is sky high, and I don't have time to enjoy my grandson, something that my parents had the opportunity to do. My temper is short, I have no patience anymore, and I doubt that I will forgive them for not doing what was the best thing for them and to think of their daughter. When my parents were my age, they were traveling, spending the winters in Palm Beach, and stuffed their parents in nursing homes without a second thought.

Yes, I'm angry. And then I cry and feel guilty and hate myself for feeling the way I feel. I hope that you all don't ever have to have this feeling about your parents.

 

[Muse]

I'm so sorry for both of you, Muse and DS. My mother doesn't have Alzeimer's, but she does have severe dementia, has had it for about five years now. To say that it's difficult is a massive understatement. I am overwhelmed on a daily basis. I take care of her and my father, 94 and 92 yrs old. My mother is difficult, stubborn, repetitive, and self-centered. I run around doing things for both of them seven days a week and am constantly stressed out.

So this might sound like I'm a b*tch. Six years ago, I had asked both of them to go to an assisted living facility...not a nursing home, but a lovely "apartment" in a facility where they would have activities, meals if they wanted them, a driver to take them to medical appointments, have their prescriptions filled - everything. It was brand new and it is a half mile from my home, so I could visit them regularly. I paid $6000 for a deposit, and at the last minute they refused to go and wanted to maintain their independence. You can't force your parents to do something, even if it's the right thing to do.

So you guessed it. Now they're too frail, sick and elderly to go to assisted living. I am their assisted living. I'm angry, I'm tired, I haven't had a vacation in years, and I can't go anywhere because they need constant care. I have hired people to come in and help me out, but my mother is so difficult that they leave within a matter of days. I've had to change my lifestyle drastically, and my husband, while he has been a great support and treated my parents as though they were his own, is up to his neck in it. We've already separated once, but we love each other and we try to maintain.

I have no advice for you, Muse. I have become bitter, though I know my mother can't help herself. I'm too old to be doing what I'm doing, my blood pressure is sky high, and I don't have time to enjoy my grandson, something that my parents had the opportunity to do. My temper is short, I have no patience anymore, and I doubt that I will forgive them for not doing what was the best thing for them and to think of their daughter. When my parents were my age, they were traveling, spending the winters in Palm Beach, and stuffed their parents in nursing homes without a second thought.

Yes, I'm angry. And then I cry and feel guilty and hate myself for feeling the way I feel. I hope that you all don't ever have to have this feeling about your parents.

*hugs* Lisa. It sucks. When I told hubby mom was coming for about a month to six weeks at least he gave me a look. I told him if this was your mother she would be here and there would be NO ISSUE. I would welcome her and do the best I can. I know why he did that though for he knows my health is dirt poor. He sees it every day how I am and what I deal with on a personal level daily. So to take this on will not help. It will be tough and it won't get better especially since we are thinking of bringing mom down from Maine permanently since my sister back home is having problems dealing with it. Just will do the best I can and hope I do the right thing.

Vacation? All my vacations is going to Maine taking care of mom for weeks at a time. In the last few years I have postpone surgeries and procedures so I could go up to help mom and I will be doing that again this time around. I'm am tired and my body is telling me to slow down but how can I?

Thanks for sharing this with us Lisa, I know it is not an easy topic.

 

[Pyxis]

One thing that I remember reading somewhere (not sure where, and not sure if it's true) but:

It's not uncommon to hear cruel things about yourself come from the mouth of one you revere. When it does, it will hurt. You will feel hurt. Accompanying this comes (your) guilt. Why, you ask am I mad? am I hurt? It's not her fault. She can't help it. I'm a rotten person.

You have to first, be kind to yourself. Your first reactions to harsh words are primal, virtually automatic and not easily (if at all) controlled. Later you'll let your rational mind in at some point and you'll be ok.

It's ok to be hurt, it's ok to be mad. Just don't let yourself blame yourself. Make an effort to take better care of yourself when she is sleeping or occupied. Take baths, long walks, all that stuff.

If you don't take care of yourself, if you can't be kind to yourself you won't be able to do either with your mom.

Just thoughts, maybe even platitudes. But all the best. Enjoy her visit.


Cheers, BostonTim

This is so true. I had my aunt from October-May 3.5 days a week, then 8 hours a day, 7 days a week from June to August.

I took her back to my place one afternoon because I had purchased some groceries that I needed to put in the fridge. So, I was inserting the key, and it has a weird angle on it, so the key can be a bitch to insert. Additionally, it sticks right before it opens. She blurted out, "Did you not pay your bills and get locked out?" It was so out of the blue....and I admit, that really pissed me off. Not for long, but it still did.

I watched her go downhill in such a bad way during that time. She's in assisted living now. There isn't anyone who can stay home with her, and she cannot be alone. Even if I had the cash flow and could do it full time, I wouldn't. It took a long time to shake it. I had far more patience than my sister did, but just really couldn't ever repeat that process.

 

[Muse]

I suspect once Saturday comes I will be writing in this thread a lot. And no reply from anyone will be needed if no one wants to.

 

[Pyxis]

I'm so sorry for both of you, Muse and DS. My mother doesn't have Alzeimer's, but she does have severe dementia, has had it for about five years now. To say that it's difficult is a massive understatement. I am overwhelmed on a daily basis. I take care of her and my father, 94 and 92 yrs old. My mother is difficult, stubborn, repetitive, and self-centered. I run around doing things for both of them seven days a week and am constantly stressed out.

So this might sound like I'm a b*tch. Six years ago, I had asked both of them to go to an assisted living facility...not a nursing home, but a lovely "apartment" in a facility where they would have activities, meals if they wanted them, a driver to take them to medical appointments, have their prescriptions filled - everything. It was brand new and it is a half mile from my home, so I could visit them regularly. I paid $6000 for a deposit, and at the last minute they refused to go and wanted to maintain their independence. You can't force your parents to do something, even if it's the right thing to do.

So you guessed it. Now they're too frail, sick and elderly to go to assisted living. I am their assisted living. I'm angry, I'm tired, I haven't had a vacation in years, and I can't go anywhere because they need constant care. I have hired people to come in and help me out, but my mother is so difficult that they leave within a matter of days. I've had to change my lifestyle drastically, and my husband, while he has been a great support and treated my parents as though they were his own, is up to his neck in it. We've already separated once, but we love each other and we try to maintain.

I have no advice for you, Muse. I have become bitter, though I know my mother can't help herself. I'm too old to be doing what I'm doing, my blood pressure is sky high, and I don't have time to enjoy my grandson, something that my parents had the opportunity to do. My temper is short, I have no patience anymore, and I doubt that I will forgive them for not doing what was the best thing for them and to think of their daughter. When my parents were my age, they were traveling, spending the winters in Palm Beach, and stuffed their parents in nursing homes without a second thought.

Yes, I'm angry. And then I cry and feel guilty and hate myself for feeling the way I feel. I hope that you all don't ever have to have this feeling about your parents.

Because my sister is much more of a bitch than I am, she sent the aunt back to her people in Iowa for 2 weeks right before school started for me, then the minute she got off the plane, she was taken to assisted living. She had refused to go, but we didn't have an option. I had school to keep me busy and not think about it, plus I was just trying to get my mind put back together after so long with her that I didn't even look back. My sister, on the other hand, broke out in something similar to shingles. Three doctors tried treating her. It required a shrink. She just...freaked out on the entire ordeal.

 

[Muse]

Because my sister is much more of a bitch than I am, she sent the aunt back to her people in Iowa for 2 weeks right before school started for me, then the minute she got off the plane, she was taken to assisted living. She had refused to go, but we didn't have an option. I had school to keep me busy and not think about it, plus I was just trying to get my mind put back together after so long with her that I didn't even look back. My sister, on the other hand, broke out in something similar to shingles. Three doctors tried treating her. It required a shrink. She just...freaked out on the entire ordeal.

The reason we brought mom down is my sister back in Maine wants to put my mom in a home. We honestly don't believe it is at that point but she is darn gosh determine. So we brought mom down, she has been in VA for five weeks when we pick her up on Saturday. She will be with me the same if not longer. I just know the minute mom is back she will be back on her mission. We told mom you can stay with us, my sister and I that are down here, as long as she wants and there is no rush in going back.

I think my sister might be experiencing that as well what you wrote above. but then she does not have patience and flies off easily at any issue that comes up or anything that disrupts her life. The fact she has not even been calling my mom like she says she use to speaks volumes for me.

 

[sammi71]

Jesus Lisa I am SO sorry for what you are going through. My Mom got dementia right before she died of cancer. My sister and i took care of her for 9 months. Me flying back and forth to Mass every 4 to 6 weeks to help my sister out, and of course that was my mom too so. Now the youngest one just coped out. My mom ended up in a nursing facility for the last few weeks of her life, there was no way we could do it at home. Muse I hope things go well for you, it can be frustrating as all get out. Lisa I hope you get a break soon, and I will be thinking of the 2 of you <3

 

[Pyxis]

The reason we brought mom down is my sister back in Maine wants to put my mom in a home. We honestly don't believe it is at that point but she is darn gosh determine. So we brought mom down, she has been in VA for five weeks when we pick her up on Saturday. She will be with me the same if not longer. I just know the minute mom is back she will be back on her mission. We told mom you can stay with us, my sister and I that are down here, as long as she wants and there is no rush in going back.

I think my sister might be experiencing that as well what you wrote above. but then she does not have patience and flies off easily at any issue that comes up or anything that disrupts her life. The fact she has not even been calling my mom like she says she use to speaks volumes for me.

I really thought I could handle it for much longer, but it's harder than you think. It was like having a toddler again. At the end, she was taking her purse apart and hiding pieces and contents everywhere. I'd find it all, put it back together, go back upstairs to try to grade papers or whatever, and she'd do it again. 5 times in one day. I said FVCK it and took her wallet. Wasn't going to search for that in case of an emergency.

I have to hand it to my sister for doing that and giving me 2 weeks to decompress before the grind at work started back up.

 

[mikiemo83]

Thoughts and prayers for all of you, difficult disease to understand and accept, then deal with. May you all find strength to continue fighting the good fight and caring for your loved ones.

 

[Muse]

I really thought I could handle it for much longer, but it's harder than you think. It was like having a toddler again. At the end, she was taking her purse apart and hiding pieces and contents everywhere. I'd find it all, put it back together, go back upstairs to try to grade papers or whatever, and she'd do it again. 5 times in one day. I said FVCK it and took her wallet. Wasn't going to search for that in case of an emergency.

I have to hand it to my sister for doing that and giving me 2 weeks to decompress before the grind at work started back up.

I know I will be challenged and that is my concern that I will fail and fail miserably. I am fortunate that there are two adults with me in the house so I am not doing it alone. I know it is probably harder then I might be conveying here. Hence again my concern. My sister has been keeping notes and I will get that also on Saturday when we go pick mom up. I already told my son he is on memere duty when I am in so much pain that I can't focus and need to be still. He will have to step up. I know he will but it will be new to him and my husband. I have a good taste of what it is like. I am already stressing and she is not even here yet. I will find out soon enough if I can do this justice and help her and return and give back all the times she has done this for me.

What else can I say or do? Hence why I started the thread.

 

[HSanders]

What mikie said, and also feel free to vent here as much as you need to.
I chose not to have kids because for one I'm not a caretaker type person so I cannot even imagine what you are all dealing with.
Hugs to you all!

 

[Muse]

What mikie said, and also feel free to vent here as much as you need to.
I chose not to have kids because for one I'm not a caretaker type person so I cannot even imagine what you are all dealing with.
Hugs to you all!

Thanks sweetie and to all who have remarked here and sent thoughts on the side.