New from US Alzheimer's Wife

AlzWife

Registered User
Nov 19, 2023
45
0
Hello, I live in the US. I know technical details about services, etc. will not apply to me, but I am here for emotional and moral support.

I have been caring for my husband for one year. He is 29 years my senior (he's 80 & I'm 51) and we have been married for 33 years (since I was 18). We have three adult children. I have seen him through early retirement when I became the main breadwinner, a minor stroke, and prostate cancer. Our age difference puts me in a fairly unusual position of having so much of my life left to live and wondering how I will spend the next 15 years of my working life and relative youth before old age sets in for me. Will it be primarily in service to him?

Like others, I am mourning the loss of our past. We were very much in love. I have gotten over that first stage of shock, anger, depression, and rage. I have been making big changes to my attitude and approach. I have started to think of my husband as a patient and not a partner and that process is painful but also helpful. Honestly, he's been checked out for years, and I was becoming more and more resentful--but the diagnosis put a lid on all that. I can look back and appreciate all the good times we had and what he's given me in terms of love and family. I should say that he is not a wealthy man, but an artist, so I did not marry for money, and I will inherit nothing.

He is in a relatively great place in that I care for him full time as our oldest son moved in to help financially since I stopped working (In October, I went back to working one day per week for sanity and extra cash). My husband has nothing to worry about, and he knows he's being well cared for.

I am not sure how long I can do this. I have become more spiritual and convinced myself that this is not a choice but what God wants from everyone--for us to care for each other. I have convinced myself that nothing else will be as truly satisfying in the long run.

How could I put him in a home? He's not at that point yet anyway and that means (I suspect) that he will slowly deteriorate over many years. Despite my resolutions, I find looking at him every day and playing along with his word salads and weird behaviors to be very draining and stressful. I am living my life to serve his basic needs and otherwise hiding from him. I don't sleep in our bed anymore. I do not have any help and don't really get a break. I am also cooking for my son and feeling very trapped in general. I have become a full time homemaker, I was a college professor previously.

Our son works from home and enjoys living where we live (a rural area rather than big city--we made that move during COVID). At first I was concerned about his sacrifice but realize he doesn't have it that bad at all. He only gives me the amount of money he'd spend if he lived alone and rented his own place & paid for utilities and food, etc. Plus he gets all his meals cooked for him. It's good to have him here for emergencies or so I can sneak out for a few hours on the weekend, but he's not actively caretaking. I can't do anything during the week b/c son is too busy with work to look after dad. Dad could be left alone more at this point, but there's a danger with the dog. He will let the dog out or try to walk him and possibly fall. Getting rid of the dog has been discussed, and that would at least temporary allow me to work more or get out more, but 1) the dog is a great friend and 2) I would still have to return to the caregiving after work and just be extra stressed as I was before I stopped working.

Plus, husband gets very disoriented when I am not home since son is out-of-sight, out-of-mind working all day in his home office. Husband does not eat when I am not home. When I return, he acts very agitated and often angry that I was gone for so long. On Tuesdays, I work and drop the dog at doggie daycare. Last week, when I returned from work husband was sulking and angry and I asked him what was up. He said: "you just disappear for hours, leave and then come back, fly in and out, etc." I said I was at work--at the school. He had no idea. He had not eaten, I was pretty shocked that son did not make him even a sandwich. (32 year old son often won't eat if I don't make his lunch). Husband can't keep track and he gets really moody when I leave him. It's a lot to manage for me so I've resigned myself to just hanging around or dragging husband and/or dog with me everywhere. I spend much of the day in the kitchen.

I guess I am just wondering if I should be planning some new path or making some new inroads. The resignation (or--to put it more positively "acceptance") has worked for the last few months to keep me calm and focused, but I fear that this lifestyle is a death sentence for me long term.

Rather than being mournful, I am starting to feel like I could start a new chapter of my life that does not involve being homebound. I find myself wishing he would progress quickly so that I can say I provided his care until the end (but also have some good years left for myself).

For those of you who have made it this far: thank you for bearing witness to my rant.

What do you think my best options are? I know it's a personal decision & if I meditate on the future, I can see that changes are necessary. Also, I think if his mind were sound, my husband would say he does not want our lives to stand still for him.

It's helpful to get others' insights. I need a plan one way or the other. What changes have you all made? What worked for you?
Thank you & good luck to everyone.
 
Last edited:

canary

Registered User
Feb 25, 2014
25,433
0
South coast
Hello @AlzWife and welcome to the forum

Wow, youve got a lot going on there and I can see that you have lots of things turning over in your mind.

I think one of the main things is to keep your work, its important for finances, to give you a bit of stability, ordinary conversations and for the future. As your husband is 80 now, I rather doubt that he will still be alive once you retire - dementia is a life-limiting disease.

Could you make a lunch box for your husband and leave snacks and a flask for him? Perhaps in a transparent box so that he knows what it in there and can help himself while you are at work?

Also, could you find someone to sit and chat with him, or perhaps take him out for a couple of hours? As his dementia progresses you will need extra help and this will get him used to other people being around. It will also give you some much needed respite. Dont get so caught up in his needs that you neglect your own - that way madness lies
xx
 

Jaded'n'faded

Registered User
Jan 23, 2019
5,339
0
High Peak
Teach your son how to cook. Doesn't he think you have enough to do (and to cope with) without being expected to look after him too? He may be helping financially but you're not a paid servant. It's not unreasonable to expect him to help more with his father.

It's also not unreasonable to not want the rest of your life till your own retirement to be that of a carer. Is there any daycare your husband could attend?

Just my opinion...
 

Lawson58

Registered User
Aug 1, 2014
4,445
0
Victoria, Australia
I think what you are feeling right now is the anger, resentment and frustration that most of us feel at some time in the caring role. You have had your life turned upside down without it being your choice so why shouldn’t you be angry? Most of us have found ourselves as carers without even realising that it was sneaking up on us and it can be a daunting moment when we find that our lives are given up to living a life that none of us would have ever wanted.

While your husband may not need care at the moment, at the age he is, deterioration is likely to occur more quickly than someone younger so start thinking about how you can prepare for that. Find out how things work in US and how he might be funded if he needs care.

You have three adult children but only mention one son. Perhaps a family conference could help to see if the others might be able to give you a little time so that you can have a break. If that’s not possible, don’t cook for your son. That might sound a bit tough but he is obviously enjoying having his mum around without contributing in a non financial way to the home.

You need to investigate what services are available locally and that are suitable. Every little bit helps but you have to go looking yourself because no one is going to come knocking on your door to offer it. If your husband still has capacity, you should try and get things such as wills, Powers of Attorney sorted while you can.

The biggest problem with a disease like Alzheimer’s is that no one can tell you how long your husband will live. You must take great care to hang on to your own sense of self, being aware that you need to be flexible because you simply cannot guess what might be around the corner and it may be not too wise to over commit to anything.

Keeping up social contacts is a priority in my mind. I am a member of an environmental group and while we work, we chat constantly and the morning coffee is the high point of the meeting. I am also a member of a private gym and workout with a lovely group. I also take my dog to a dog park and have got know lots of people on a casual basis but there is always something to laugh watching our dogs having fun.

It might be a long haul ahead, but maybe not. Lots of people with dementia can live quite long lives and somehow we manage to adjust but invariably with lots of ups and downs. My husband has just turned 84 and I am almost 80 years old. I have been caring for my husband for almost ten years and he has chronic heart failure as well.

Yes, I have had some rough spots but mostly have tried to remain stable. I do understand your need to look forward and to have plans for your own future and that there are times when you simply feel that you are a person that exist only in the shadows of this disease. It takes work to survive it and the path you walk will be different to everyone else’s.

Please stay in touch and let us know how you are going.
 

The Saint

Registered User
Apr 29, 2020
46
0
Two things strike me here. You should keep working. You are relatively young and need that stimulation and social interaction that work allows. Secondly your son needs to pull his socks up. He may be very busy working from home but any job allows a few minutes to spare for bathroom breaks and a moment to grab a sandwich. He could use those moments to let your husband know he is about and to provide him with food and drink maybe a couple of times a day. Personally I think he should share more of the caring if he is living there. He can't just ignore the situation and allow you to do everything.

@Violet Jane (sorry if I have quoted wrongly but I'm sure that is who it was) posted a comment a few weeks back about dementia ruining two lives if you let it. I'm sure someone will find it. It is so relevant to you and your situation.

I don't know what help is available to carers in the US but start searching and good luck!
 

northumbrian_k

Volunteer Host
Mar 2, 2017
4,736
0
Newcastle
Hi @AlzWife and welcome to Dementia Support Forum our friendly and helpful community of people who have experience of many aspects of dementia. Although we are primarily UK-based you will find a lot of information and support here as dementia doesn't recognise borders. You'll have seen already what posting here can do. Many of the issues you are facing have been faced by others here. I am sure that you will feel the benefit of our support.
 

AlzWife

Registered User
Nov 19, 2023
45
0
Hello @AlzWife and welcome to the forum

Wow, youve got a lot going on there and I can see that you have lots of things turning over in your mind.

I think one of the main things is to keep your work, its important for finances, to give you a bit of stability, ordinary conversations and for the future. As your husband is 80 now, I rather doubt that he will still be alive once you retire - dementia is a life-limiting disease.

Could you make a lunch box for your husband and leave snacks and a flask for him? Perhaps in a transparent box so that he knows what it in there and can help himself while you are at work?

Also, could you find someone to sit and chat with him, or perhaps take him out for a couple of hours? As his dementia progresses you will need extra help and this will get him used to other people being around. It will also give you some much needed respite. Dont get so caught up in his needs that you neglect your own - that way madness lies
xx
Dear Canary,
Thank you for your reply. When I post, it's usually a day when I am at my wits' end and I need to hear some good advice and encouraging words from people who know what I'm going through. It's the kindness of strangers that gets up through a rough patch sometimes!

Lunch boxes are a very good idea and so is getting help. The help part is complicated and feels awkward right now but I'll figure it out.

I'll keep you posted. Good luck on your journey & thank you!
 

AlzWife

Registered User
Nov 19, 2023
45
0
Teach your son how to cook. Doesn't he think you have enough to do (and to cope with) without being expected to look after him too? He may be helping financially but you're not a paid servant. It's not unreasonable to expect him to help more with his father.

It's also not unreasonable to not want the rest of your life till your own retirement to be that of a carer. Is there any daycare your husband could attend?

Just my opinion...
Dear Jaded'n'faded,
You're right that I should ask more from my son. If it's too much for me and becomes too much for him then we can seek more help, but, if I try to muscle through too long, I'll only become more burnt out and more resentful.

I think daycare is an excellent idea, but I doubt he'll like it! First step is to find one that we can afford. He is truly driving me crazy. He is good natured but is constantly pestering me. The idea of having him out of the house during the day seems like a dream. LOL.
 

AlzWife

Registered User
Nov 19, 2023
45
0
I think what you are feeling right now is the anger, resentment and frustration that most of us feel at some time in the caring role. You have had your life turned upside down without it being your choice so why shouldn’t you be angry? Most of us have found ourselves as carers without even realising that it was sneaking up on us and it can be a daunting moment when we find that our lives are given up to living a life that none of us would have ever wanted.

While your husband may not need care at the moment, at the age he is, deterioration is likely to occur more quickly than someone younger so start thinking about how you can prepare for that. Find out how things work in US and how he might be funded if he needs care.

You have three adult children but only mention one son. Perhaps a family conference could help to see if the others might be able to give you a little time so that you can have a break. If that’s not possible, don’t cook for your son. That might sound a bit tough but he is obviously enjoying having his mum around without contributing in a non financial way to the home.

You need to investigate what services are available locally and that are suitable. Every little bit helps but you have to go looking yourself because no one is going to come knocking on your door to offer it. If your husband still has capacity, you should try and get things such as wills, Powers of Attorney sorted while you can.

The biggest problem with a disease like Alzheimer’s is that no one can tell you how long your husband will live. You must take great care to hang on to your own sense of self, being aware that you need to be flexible because you simply cannot guess what might be around the corner and it may be not too wise to over commit to anything.

Keeping up social contacts is a priority in my mind. I am a member of an environmental group and while we work, we chat constantly and the morning coffee is the high point of the meeting. I am also a member of a private gym and workout with a lovely group. I also take my dog to a dog park and have got know lots of people on a casual basis but there is always something to laugh watching our dogs having fun.

It might be a long haul ahead, but maybe not. Lots of people with dementia can live quite long lives and somehow we manage to adjust but invariably with lots of ups and downs. My husband has just turned 84 and I am almost 80 years old. I have been caring for my husband for almost ten years and he has chronic heart failure as well.

Yes, I have had some rough spots but mostly have tried to remain stable. I do understand your need to look forward and to have plans for your own future and that there are times when you simply feel that you are a person that exist only in the shadows of this disease. It takes work to survive it and the path you walk will be different to everyone else’s.

Please stay in touch and let us know how you are going.
Dear Lawson58,
Yes, the anger comes back every so often and his needs and behavior change so the rollercoaster ride never really ends.

You are 100% correct that I should not overcommit because caring for my husband is a full-time job already, and I cannot commit to any more work as long as I ma his FT carer.

I teach elementary school science one day per week. At 3:15 on Tuesdays, all I can think is "THANK GOD I have a week to recover!" It is wonderful to be with the children and to be a part of something. I can say I work at XYZ school and it makes me really proud. I am keeping my foot in the door of the school system which is where I will most likely work FT when I go back to working FT--whenever that is (if ever). I may just work PT forever.

I really appreciate your perspective. I wholeheartedly agree that "It takes work to survive it and the path you walk will be different to everyone else’s."

Tomorrow is Thanksgiving in the USA--we gather with family and friends, eat a big feast of traditional food--(centered around a turkey!) and give thanks. I include you and the others on this forum in my thanksgiving. this year.

Be well.
 

AlzWife

Registered User
Nov 19, 2023
45
0
Two things strike me here. You should keep working. You are relatively young and need that stimulation and social interaction that work allows. Secondly your son needs to pull his socks up. He may be very busy working from home but any job allows a few minutes to spare for bathroom breaks and a moment to grab a sandwich. He could use those moments to let your husband know he is about and to provide him with food and drink maybe a couple of times a day. Personally I think he should share more of the caring if he is living there. He can't just ignore the situation and allow you to do everything.

@Violet Jane (sorry if I have quoted wrongly but I'm sure that is who it was) posted a comment a few weeks back about dementia ruining two lives if you let it. I'm sure someone will find it. It is so relevant to you and your situation.

I don't know what help is available to carers in the US but start searching and good luck!
Dear The Saint,
I am eager to find the post you mentioned. Thank you.

I need to ask more from my son, I agree. He will comply--I just have trouble asking. He is not stingy but sort of in his own world.

I will be looking for help. I am at the point of really needing a consistent break rather than ad-hoc ones.
 

canary

Registered User
Feb 25, 2014
25,433
0
South coast
I am eager to find the post you mentioned.
Its been quoted several times on here. Ive quoted it and so have others
The full quote is: Dementia will take one life, dont let it take two

The point of it is that we musnt completely sacrifice ourself, but have to look to our own wellbeing too.

Edit to say - this is the post I recently made, but it may not be the one that @The Saint is thinking of
 

leny connery

Registered User
Nov 13, 2022
492
0
Hello, I live in the US. I know technical details about services, etc. will not apply to me, but I am here for emotional and moral support.

I have been caring for my husband for one year. He is 29 years my senior (he's 80 & I'm 51) and we have been married for 33 years (since I was 18). We have three adult children. I have seen him through early retirement when I became the main breadwinner, a minor stroke, and prostate cancer. Our age difference puts me in a fairly unusual position of having so much of my life left to live and wondering how I will spend the next 15 years of my working life and relative youth before old age sets in for me. Will it be primarily in service to him?

Like others, I am mourning the loss of our past. We were very much in love. I have gotten over that first stage of shock, anger, depression, and rage. I have been making big changes to my attitude and approach. I have started to think of my husband as a patient and not a partner and that process is painful but also helpful. Honestly, he's been checked out for years, and I was becoming more and more resentful--but the diagnosis put a lid on all that. I can look back and appreciate all the good times we had and what he's given me in terms of love and family. I should say that he is not a wealthy man, but an artist, so I did not marry for money, and I will inherit nothing.

He is in a relatively great place in that I care for him full time as our oldest son moved in to help financially since I stopped working (In October, I went back to working one day per week for sanity and extra cash). My husband has nothing to worry about, and he knows he's being well cared for.

I am not sure how long I can do this. I have become more spiritual and convinced myself that this is not a choice but what God wants from everyone--for us to care for each other. I have convinced myself that nothing else will be as truly satisfying in the long run.

How could I put him in a home? He's not at that point yet anyway and that means (I suspect) that he will slowly deteriorate over many years. Despite my resolutions, I find looking at him every day and playing along with his word salads and weird behaviors to be very draining and stressful. I am living my life to serve his basic needs and otherwise hiding from him. I don't sleep in our bed anymore. I do not have any help and don't really get a break. I am also cooking for my son and feeling very trapped in general. I have become a full time homemaker, I was a college professor previously.

Our son works from home and enjoys living where we live (a rural area rather than big city--we made that move during COVID). At first I was concerned about his sacrifice but realize he doesn't have it that bad at all. He only gives me the amount of money he'd spend if he lived alone and rented his own place & paid for utilities and food, etc. Plus he gets all his meals cooked for him. It's good to have him here for emergencies or so I can sneak out for a few hours on the weekend, but he's not actively caretaking. I can't do anything during the week b/c son is too busy with work to look after dad. Dad could be left alone more at this point, but there's a danger with the dog. He will let the dog out or try to walk him and possibly fall. Getting rid of the dog has been discussed, and that would at least temporary allow me to work more or get out more, but 1) the dog is a great friend and 2) I would still have to return to the caregiving after work and just be extra stressed as I was before I stopped working.

Plus, husband gets very disoriented when I am not home since son is out-of-sight, out-of-mind working all day in his home office. Husband does not eat when I am not home. When I return, he acts very agitated and often angry that I was gone for so long. On Tuesdays, I work and drop the dog at doggie daycare. Last week, when I returned from work husband was sulking and angry and I asked him what was up. He said: "you just disappear for hours, leave and then come back, fly in and out, etc." I said I was at work--at the school. He had no idea. He had not eaten, I was pretty shocked that son did not make him even a sandwich. (32 year old son often won't eat if I don't make his lunch). Husband can't keep track and he gets really moody when I leave him. It's a lot to manage for me so I've resigned myself to just hanging around or dragging husband and/or dog with me everywhere. I spend much of the day in the kitchen.

I guess I am just wondering if I should be planning some new path or making some new inroads. The resignation (or--to put it more positively "acceptance") has worked for the last few months to keep me calm and focused, but I fear that this lifestyle is a death sentence for me long term.

Rather than being mournful, I am starting to feel like I could start a new chapter of my life that does not involve being homebound. I find myself wishing he would progress quickly so that I can say I provided his care until the end (but also have some good years left for myself).

For those of you who have made it this far: thank you for bearing witness to my rant.

What do you think my best options are? I know it's a personal decision & if I meditate on the future, I can see that changes are necessary. Also, I think if his mind were sound, my husband would say he does not want our lives to stand still for him.

It's helpful to get others' insights. I need a plan one way or the other. What changes have you all made? What worked for you?
Thank you & good luck to everyone.
 

leny connery

Registered User
Nov 13, 2022
492
0
hi , welcome to our UK forum. we are all in the same boat here a carers. You are still young, and seem organised and capable too.Like yours, mine feels lost if left too long without me. I can leave him alone for a couple of hours with no worries, but he also won't think of eating unless offered (by me). totally depend on me for outing and socialising, would not happily go and be left somewhere like day care. like most , they do not like to admit, nor are they aware anything is wrong with them. bed time is tricky because he sees me as his mum every night (now even often in daytime too) but as soon as I make a bed somewhere else , withing an hour he looks foe me and asks me to come to bed. musical bed every night. please do keep your outside interest and life going, Please do ask you son to at least check out his dad when you are not at home. it is not a lot to ask. and maybe your other children too, so that you can have regular 'me time'. Hope you all have had a good thanksgiving
 

Cardinal

Registered User
Oct 4, 2023
226
0
@AlzWife I’m also from the US but prefer this message board. I find the advice on this site more useful and helpful than other sites. Like you my husband is early stages. He has Alzheimer’s. I work 2 days a week. I have a couple of suggestions that I find work for me in how to handle things with my husband on the days that I work.

Like your husband he won’t eat when I’m not home. I think he forgets. He also gets very grumpy if he’s hungry. This is what works for me. I make him a lunch, put it in a lunch bag with his name on it and the word lunch. If I only tell him what food is in the refrigerator for lunch he doesn’t touch it. I also leave him a note that says eat lunch at 12:00 noon. I then call him during my lunch break and remind him to eat his lunch. So far his lunch has been eaten when I get home.

I also leave a second note that says I’m at work and what time I’ll be back home. I also write on the calendar we have on the wall that I work that day and what hours I’m working. I leave the notes on the table by the front door. Somewhere where he’ll see it but not throw it away.

Hopefully these things might make your workdays a little easier.
 

AlzWife

Registered User
Nov 19, 2023
45
0
@AlzWife I’m also from the US but prefer this message board. I find the advice on this site more useful and helpful than other sites. Like you my husband is early stages. He has Alzheimer’s. I work 2 days a week. I have a couple of suggestions that I find work for me in how to handle things with my husband on the days that I work.

Like your husband he won’t eat when I’m not home. I think he forgets. He also gets very grumpy if he’s hungry. This is what works for me. I make him a lunch, put it in a lunch bag with his name on it and the word lunch. If I only tell him what food is in the refrigerator for lunch he doesn’t touch it. I also leave him a note that says eat lunch at 12:00 noon. I then call him during my lunch break and remind him to eat his lunch. So far his lunch has been eaten when I get home.

I also leave a second note that says I’m at work and what time I’ll be back home. I also write on the calendar we have on the wall that I work that day and what hours I’m working. I leave the notes on the table by the front door. Somewhere where he’ll see it but not throw it away.

Hopefully these things might make your workdays a little easier.
This is excellent advice & very practical & logical. I have been thinking of doing this for a while, but I guess i just get overwhelmed and sort of forget to do the simplest things! Thank you!
 

AlzWife

Registered User
Nov 19, 2023
45
0
hi , welcome to our UK forum. we are all in the same boat here a carers. You are still young, and seem organised and capable too.Like yours, mine feels lost if left too long without me. I can leave him alone for a couple of hours with no worries, but he also won't think of eating unless offered (by me). totally depend on me for outing and socialising, would not happily go and be left somewhere like day care. like most , they do not like to admit, nor are they aware anything is wrong with them. bed time is tricky because he sees me as his mum every night (now even often in daytime too) but as soon as I make a bed somewhere else , withing an hour he looks foe me and asks me to come to bed. musical bed every night. please do keep your outside interest and life going, Please do ask you son to at least check out his dad when you are not at home. it is not a lot to ask. and maybe your other children too, so that you can have regular 'me time'. Hope you all have had a good thanksgiving
Thanks Leny, I had to move beds b/c he'll just jabber all night then when finally settled/sleeping he gets very grabby and I just feel so confined. I need space physically & mentally. He has not come looking for me yet but acts surprised every night when I say that I am going to sleep in the basement. I tell him its b/c my shoulder freezes and I need room to stretch, which is true, but it's more than that!

Do you mean that your husband literally thinks you are his mom at night (or is it a metaphor)?

Thanks for the well wishes! I'll post a photo of the feast.

PS younger two kids live together 3 hours away in the City since we moved to the country. Oldest son is the one who moved in with us. So youngers come for visits and help while here--but cant help regularly.
 

Veritas

Registered User
Jun 15, 2020
325
0
@AlzWife
Whatever you do, hang on to your work. There are all sorts of reasons why this is a good idea, but the most important one is that it's your link with sanity and adult conversation.

My PWD has reached the point - three and a half years on from diagnosis, but at least ten years from when I first noticed 'odd' things - where his intellect is shot. Completely. For me this is the the worst thing. It is so boring/draining/frustrating/irritating when even as you are explaining something to him (usually for the fifth time in as many minutes) it is obvious that he just doesn't understand. The obsessions. The repetitive questions. The constant interruptions (three times while writing this post!). Having to undo muddles. Listening out all the time to make sure he isn't over-feeding his dog. I think he is often bored but as he won't leave the dog at home alone our options for external activities are very limited.

We do now have someone coming in about once a week to 'keep him company', and our daughters are brilliant, but the reality is that piece by piece, I've lost important bits of me and I'm not sure I'll ever get them back now. You are a lot younger than I am; don't let this happen to you.

Three years ago, I was planning on the basis that he would stay at home with me until the end. I no longer think this is going to be possible. It's not that I couldn't cope with the personal care side of things - I don't have any particular concerns about that. So far, he's not become violent or abusive - though he does sometimes get angry with me. It's the total loss of freedom and control over my own life that is increasingly hard to take.

Remarks that make me want to throw things:
"It's a privilege to care for someone else" - I'm not a saint and have never pretended to be one
"Living well with dementia" - never been able to work out what that means, especially for carers
 

AlzWife

Registered User
Nov 19, 2023
45
0
@AlzWife
Whatever you do, hang on to your work. There are all sorts of reasons why this is a good idea, but the most important one is that it's your link with sanity and adult conversation.

My PWD has reached the point - three and a half years on from diagnosis, but at least ten years from when I first noticed 'odd' things - where his intellect is shot. Completely. For me this is the the worst thing. It is so boring/draining/frustrating/irritating when even as you are explaining something to him (usually for the fifth time in as many minutes) it is obvious that he just doesn't understand. The obsessions. The repetitive questions. The constant interruptions (three times while writing this post!). Having to undo muddles. Listening out all the time to make sure he isn't over-feeding his dog. I think he is often bored but as he won't leave the dog at home alone our options for external activities are very limited.

We do now have someone coming in about once a week to 'keep him company', and our daughters are brilliant, but the reality is that piece by piece, I've lost important bits of me and I'm not sure I'll ever get them back now. You are a lot younger than I am; don't let this happen to you.

Three years ago, I was planning on the basis that he would stay at home with me until the end. I no longer think this is going to be possible. It's not that I couldn't cope with the personal care side of things - I don't have any particular concerns about that. So far, he's not become violent or abusive - though he does sometimes get angry with me. It's the total loss of freedom and control over my own life that is increasingly hard to take.

Remarks that make me want to throw things:
"It's a privilege to care for someone else" - I'm not a saint and have never pretended to be one
"Living well with dementia" - never been able to work out what that means, especially for carers
Dear Veritas,
I literally could not have said it better myself: "It's the total loss of freedom and control over my own life that is increasingly hard to take."

THANK YOU for putting words to & validating my feelings.

The privilege to care for someone with dementia thing worked for a few months. The guilt/feelings of obligation toward my children to do my best fro him kick in often.

I know that my husband, like yours, feels his own boredom and loss, but I can't help that more than I am now without becoming a total martyr & even then he will continue to decline.

This is a man who lived on the other side of the world from his beloved mother who was all alone (Europe/Australia) and when he visited her once in ten years found that she did not recognize him, yet he was incapable of making arrangements for her and just left. Luckily, her sister-in-law looked in on her often and eventually placed her in a home with my husband's permission (years after the "who are you?" event). I'm not saying this to be vengeful but it shows how much or little each of us is capable of and that we all have limits. I suspect that I (like you) will find ten years of symptoms & 3.5 years of care to be more than I am willing to bear.

Have you looked into full time care for your husband?

Thank you for this warning/sentiment/advice"
piece by piece, I've lost important bits of me and I'm not sure I'll ever get them back now. You are a lot younger than I am; don't let this happen to you.
I wish you the very best!
 

Veritas

Registered User
Jun 15, 2020
325
0
@AlzWife
Thank you for the good wishes - reciprocated!

If I wasn’t here, my husband would have to be in residential care full time. There are people in worse state than he is still living at home, but being on his own would be just impossible for him. As I am here, we live from day to day, but I am sure now that there will come a point when residential care will be the best option for us both. Then, perhaps, I will be able to be a wife again, instead of a carer, although it will still be true that to all intents and purposes I am “a widow, but without the benefits”.
 

leny connery

Registered User
Nov 13, 2022
492
0
Thanks Leny, I had to move beds b/c he'll just jabber all night then when finally settled/sleeping he gets very grabby and I just feel so confined. I need space physically & mentally. He has not come looking for me yet but acts surprised every night when I say that I am going to sleep in the basement. I tell him its b/c my shoulder freezes and I need room to stretch, which is true, but it's more than that!

Do you mean that your husband literally thinks you are his mom at night (or is it a metaphor)?

Thanks for the well wishes! I'll post a photo of the feast.

PS younger two kids live together 3 hours away in the City since we moved to the country. Oldest son is the one who moved in with us. So youngers come for visits and help while here--but cant help regularly.