If you partner has dementia - how many of us want to walk away?

karaokePete

Registered User
Jul 23, 2017
5,067
N Ireland
Your statement resonates so strongly with me. It describes exactly how I feel. I am lonely and long for the partner, friend and good companion
I had for many years, now lost to dementia. His inability to think rationally and to understand things really frustrates me and shamefully I often get annoyed with him. I do not talk to any of our friends about the situation as it feels disloyal and I am quite a private person. My daughter knows how things are and is a loving support, but she lives in Australia. It has been helpful reading this thread, there is some comfort in knowing it is a common experience for many people.
Hello @Violetrose, I see this is your first post and maybe it will be the first of many as this is a friendly and supportive place. As you have been a member for a while you may have seen this already, however, as you mention some communication type problems I wonder if this thread may be of some value to you https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/

In relation to the loneliness, I wonder if there is a Memory Cafe or suchlike near you where you could chat with people in a similar position? You will find details about your area if you click the light blue box in the top right corner of the page that reads Alzheimer’s Society and enter your post code on the new page
 
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secrets

Registered User
May 27, 2017
17
As hard as it I have never wanted to walk away or consider a care home.
My partner not only has dementia but is now bedbound with barely any mobility,plus diabeties and epilepsy,and caring is a full time job plus I have business to attend to ,but I am sure I will never get used to dealing with a commode and incontinence pants,but I just get on with it.
I must confess I am disappointed with all those 'friends' who we were very generous to,but we never see any of them now and the feeling of isolation can be very difficult,but that's life,we live and learn.
 

Grahamstown

Registered User
Jan 12, 2018
1,586
East of England
Your statement resonates so strongly with me. It describes exactly how I feel. I am lonely and long for the partner, friend and good companion
I had for many years, now lost to dementia. His inability to think rationally and to understand things really frustrates me and shamefully I often get annoyed with him. I do not talk to any of our friends about the situation as it feels disloyal and I am quite a private person. My daughter knows how things are and is a loving support, but she lives in Australia. It has been helpful reading this thread, there is some comfort in knowing it is a common experience for many people.
I do hope that you can come to the point where you do not have to get annoyed or at least not express it. I was getting full of anger but after reading and absorbing the posts around TP, I have managed to stop for the most part. Good luck with your efforts to become calmer, because if you can, I think it helps. We can’t be saints all the time but maybe more of the time.
 

Alanx

New member
Dec 23, 2017
2
Dementia is a test for relationships, as I read when I first joined TP.
Once I realized love was over (if it ever was love), I found new reasons why I should stay. At the moment I've found two: honesty and economic interest
I know how you feel, I care for my father who asked me to take care of him, 3 years ago just as the signs of dementia was showing. Since then I have had court battles with my brothers about what my dad has done for me financially. Now each day I see him become a man I do not know. I feel trapped into looking after him for what he has done for me personally. But then I start to think I am repaying him for what he did for me as a child and also a man. I do miss having someone to chat with and a moan, lol. I do work but my evenings and weekend are spent trapped indoors with my father. But My dad always use to say, nothing lasts for ever and I am sure it wont.
 

Patrioted

Registered User
Jul 4, 2017
23
Okay. I get it. It’s hard. Sometimes it’s incredibly hard. But what ever happened to “for better or for worse?” When you took that oath did you mean it or did you just mean the “for better part” but not the “for worse part.” Since when do you get to bail out when the going gets tough?

What you need to do is ask yourself a very honest question. Do you need to put your spouse in care for their benefit or just to relieve you of this “burden” who was the love of your life? Ask yourself, “if the situation were reversed would they bail on me during my greatest hour of need?”

It has nothing to do with their not remembering you. It has everything to do with your remembering them. It’s all about genuine love and commitment unless you opine that love ends when someone gets sick. Ask yourself, would you want your spouse, parent or sibling to care for and treat you the way you care for and treat them? Would you?

I have all the compassion in the world for dementia caregivers. My heart goes out to all of you. I am not a caregiver myself but I know very well how hard it is to care for a dementia patient. I am actually an Alzheimer’s patient myself who still has most of my cognitive abilities. I told my wife to please take care of me for as long as you can. Get help when you need it. Don’t wait. Get help early not at the “collapse point.” Don’t attempt to do this by yourself. Just part-time reliable in-home care helps greatly. Enlist family and friends to help you. Don’t be afraid to ask for the help that you absolutely know that you need. If and when it reaches a point that it is beyond your ability to cope, especially if the patient becomes a danger to his or herself or to you, then it’s time to put your loved one in a nursing home.

Remember that massively sick person who through no fault of their own was afflicted with debilitating dementia once loved you with all their heart and soul. They fully committed to you “for better or for worse.” You were the love of their life until their brain was ravaged by this cruel disease. Treat them with the same love they would give you, or even more, for as long as you possibly can while you can.
 
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Lydiaann

New member
Nov 30, 2017
2
I want to run away . I plan my escape every night before I go to sleep, and yet I am still here after many years . My husband thinks nothing is wrong other than his legs don't work . It's no use telling him that his mind doesn't work either .
 

Jennyc

Registered User
Oct 3, 2011
73
Kent
My husband died with Alzheimer's Disease one year ago last week. I cared for him for 7 year's with a diagnosis, though I think he'd had it for much longer. He had seizures, was hospitalized for a week and died six weeks later in a wonderful nursing home. That six weeks was the only time he was away from me. We'd been together 51 years. When I married him I loved him dearly. Not so some years' later, after he'd slowly alienated our daughters, become aggressive and bullying, controlling and unloving towards me, given up working so we became totally dependent on me, and life became utterly miserable as far as I was concerned. Looking back I realize he had mental health issues, but it was never something he would admit to, and when it all seemed too much and I wanted to take our daughters and leave him, he threatened suicide, so I stayed. The girls grew up and left home, but were never close to their father. I worked and paid the mortgage. He stayed home and did nothing. Then he was diagnosed with Alzheimer's aged 69. I was 62 and still working.

He got worse, I had to retire to care for him. I learned an awful lot about how to handle Alzheimer's. Not to argue, not to confuse. To quietly sort things out. To arrange constant outings and things to keep him interested. Where to look for missing things, though some have never turned up. During this time his personality totally changed. He said Thankyou to me for helping him. He told me how much he loved me, that I was wonderful. As he became more dependent, while things ran smoothly, and as long as I didn't try to bring anyone else in to help, which he would not tolerate and would smash things and beat the doors and walls if I tried, he seemed happy in his life and happy in my company.

He never knew how I felt about him, how sad and bitter I was about the many incredibly unhappy years. He died in as peaceful a manner as possible. Our daughters were there for him all through his illness. They are wonderful girls.

I owed him nothing. I did my duty. It has taken me a year to get over his death, the wasted, angry years, oh, there is too much even to think about. And I know where you are coming from, Patrioted. But I did my duty, not from love but from compassion. And I owed him nothing. Not all of us are as lucky as you to be in a loving relationship, though I am incredibly sorry to hear that you have Alzheimer's, and wish you the very best.
 

Violetrose

Registered User
Jul 18, 2017
51
Didsbury Manchester
Hey I am in same position although in the fairly early stages. My husband is slowly disappearing in front of me and I don't recognise him at times. Its a very lonely situation as he seems unable to converse sensibly anymore. He still takes the dog for a walk by himself, with his oyster on, but I don't know how long that is going to last. I have been married over 50 years and I feel so guilty about feeling like this. I am terrified I am starting to dislike him. I see other older couples about and wish we were like them. The guilt is awful.
I am in a similar positron to you. My husband has changed so much,
He is just not the man I have loved for 50 years. We had a good marriage and a happy life, but now it feels so empty. There are so many mixed emotions, I love him and could never abandon him, but I do not feel close to him and I find his lack of intellect and memory really annoying and frustrating, even though I know he can't help it. I dread the future as I expect things will get worse and shamefully, I wish he would die. How terrible to think like that. I will be heartbroken when he dies, but sometimes it does feel like the lesser of 2 evils. Like you I am envious of friends whose husbands are ok and I feel terribly guilty and disloyal. What a mess it all is, but it helpful to know I am not alone in feeling like this. I hope you are
OK and feel better for getting things of your chest on the Forum.
 

manatakei

Registered User
Jul 31, 2017
2
78
portland or
I am reading and listening to how almost all of US who have a mate with dementia want to LEAVE. There must be some way we can create a caring place for our mates so we find some freedom. I really do not want my life to be so managed by his disease. My life gets smaller and smaller and I want the last years of my life spent being ENGAGED in the world not caring for some one with zero curiosity and zero interest in anything other than his own music. So people with dementia who really are no longer able to be in relationship could be in a place where they are cared for safely and there is no need for them to be involved in a relationship that they cannot participate. There needs to be an alzheimers community home. We can visit and still have a life. IS THIS POSSIBLE?
 

Violetrose

Registered User
Jul 18, 2017
51
Didsbury Manchester
I feel terrible too when I tell my daughter about these daily stupid things which are so difficult to live with. He is lovely sometimes so I try to cling onto those moments and keep calm but firm when I have to protect him. The list I created is proving invaluable because I ask him to read it when things get difficult and it saves me having to repeat myself over and over again. We must keep strong and help each other because otherwise we would break and then who would look after our sufferer? I have felt unwell today after a family visit Saturday to Sunday because of the strain I think, so back to routine tomorrow.
You are absolutely right. As you say we have to stay strong and help each other. At least with the Forum we can offload and say what we feel, to people who understand what it is like. It helps. I find it reassuring to know other people feel as I do. I hope you feel better tomorrow.
 

canary

Registered User
Feb 25, 2014
11,275
South coast
I am reading and listening to how almost all of US who have a mate with dementia want to LEAVE. There must be some way we can create a caring place for our mates so we find some freedom. I really do not want my life to be so managed by his disease. My life gets smaller and smaller and I want the last years of my life spent being ENGAGED in the world not caring for some one with zero curiosity and zero interest in anything other than his own music. So people with dementia who really are no longer able to be in relationship could be in a place where they are cared for safely and there is no need for them to be involved in a relationship that they cannot participate. There needs to be an alzheimers community home. We can visit and still have a life. IS THIS POSSIBLE?
Its called a care home
 

Grahamstown

Registered User
Jan 12, 2018
1,586
East of England
@Violetrose I am feeling more in control this weekend and managed to control my annoyance with his evening obsessions and help him overcome them. This sundowning is a tricky thing to manage and I have to be at my most controlled to avoid losing it. Once we are over the hump he goes to bed and reads or wanders about and I can relax. One day at a time. It has been a much better weekend than I had expected, with extended family luncheon and visits both Friday and Monday but a settled routine is generally best. Hope you are ok too.
 

LadyA

Registered User
Oct 19, 2009
13,557
Ireland
@manatakei I think probably the most that can be said maybe is that there are times when almost all of the contributors to this particular thread want to leave. Talking Point has around 60,000 members I think. And I'm sure that feelings of wishing to escape from the nightmare and intense pressure of dealing with the more difficult stages of dementia, and the stress of watching someone we love deteriorate day by day, has had most of us now and then wish we could leave that behind us, and have everything be as it should. But not necessarily leave the person we care for and our care for them. I even had someone say to me, when my husband's illness turned aggressive and violent, with little sleep for either of us and I literally couldn't go to the toilet on my own, "It can't go on forever, and some day you'll have your life back. " They were trying to be comforting. I was not comforted. Of course I knew that it would not go on forever, and it didn't. It's a vile, cruel illness, and it's only going one way.
 

margherita

Registered User
May 30, 2017
2,473
Italy, Milan and Acqui Terme
I know how you feel, I care for my father who asked me to take care of him, 3 years ago just as the signs of dementia was showing. Since then I have had court battles with my brothers about what my dad has done for me financially. Now each day I see him become a man I do not know. I feel trapped into looking after him for what he has done for me personally. But then I start to think I am repaying him for what he did for me as a child and also a man. I do miss having someone to chat with and a moan, lol. I do work but my evenings and weekend are spent trapped indoors with my father. But My dad always use to say, nothing lasts for ever and I am sure it wont.
Your father's right. Nothing lasts for ever, but I often wonder how long all this will last. I am 66, so I can't wait long..
 

Grahamstown

Registered User
Jan 12, 2018
1,586
East of England
I think that those of us who say we want to walk away are reacting in an instinctive way because what is more natural than to want to escape from a dreadful situation? How many of us would actually do it? We are letting off steam and saying the unsayable in our world but would never carry it out.
 

Patrioted

Registered User
Jul 4, 2017
23
I would like to amend my previous comment - not change it in any way but to add something to it that I unfortunately overlooked. My original comment was directed at couples who had a mostly happy and loving relationship prior to a spouse receiving a dementia diagnosis. I unfortunately overlooked those couples who struggled with their relationships prior to that diagnosis.

Those in great marriages must still endure the incredibly cruel disease that is dementia, especially Alzheimer’s. There is nothing easy about it, not ever. But the genuine love that was shared between the couple over decades of marriage has to make the cargiving at least easier albeit not easy. On the other hand if ones spouse was cruel, mean-spirited, lazy, promiscuous, and was a bad parent and then he or she developed dementia the caregiving for that spouse surpasses ordinary difficulty and reaches the level of anguish bordering on torture.

How does one properly provide loving care to the very person who for years either cheated on them, verbally and sometimes physically abused them, sometimes subjected them to drunkenness or drug abuse, forced them to survive on even less then a modest income incident to their behavior or laziness, and subjected their children to dreadful parenting. That really is to much to ask of a person and no one of good conscience could justly criticise them for leaving that situation. Still, those who remain and endure and still provide that critical cargiving move from mere kindness to a level of near sainthood.
 
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maryjoan

Registered User
Mar 25, 2017
1,394
South of the Border
As hard as it is I have never wanted to walk away although certainly my life is now very different in being tied to the house with no holidays or trips out as we used to do.Not only does my partner David have dementia,he now has no mobility and is bedbound,plus diabeties and epilepsy.i do pay for a lady to come in and give him a bedbath,but apart from that I do it all,and I must confess that dealing with a commode and the incontanance pants is not at all nice.i think the feeling of isolation is upsetting and I question all those 'friends' who we used to see and were so generous to are no longer in the picture.
David was the most amazing and clever man I have ever known,and he deserves the best I can do,and I will never resort to a care home,for better or worse it is my absolute duty to keep keeping on,for non of us are promised a rose garden.
I can see this point of view and empathise with it entirely. My partner and I have only been together for 7 years, and I think this disease started to rear its ugly head about 3 years ago. He was married for 30 odd years, and then had another relationship that lasted 11 years, before me. Both ladies are very nice, and the ex wife particularly, I have got to know reasonably well. But both say they have had the lucky escape and I have drawn the short straw in being with him as his life has gone downhill.

The emotions that go with caring for someone with this plague of a disease are complex for everyone, I can see that. It truly is a scourge on our lives. I have been a carer before for other people in my life, and I can do the caring side, but the total BOREDOM of living like I do is bringing me down. He was so intelligent, and now he has a 'set' response to what is said to him, that I can almost predict his every word.

We used to enjoy many games of scrabble, and I can see that it is an excellent game for keeping his mind ticking - but each game is so dull now, and sometimes I do enjoy it, but mostly my head is screaming when he wants another game. Often 3 x 1 hour games a day, and I am still trying to work from home, as we need my income..........
 

Newness

New member
Dec 5, 2017
2
I could see my husband getting worse, and wanted to leave but my conscience wouldn't let me.
He is 13 years older than me and now I am a full time carer to a man who is unable to walk or do anything without helpers. His brain doesn't tell his body to move his legs and his brain doesn't tell him to eat his meals. I have to offer encouragement to get him to eat.
He fell in early February and went to hospital and he is still there...7 weeks on.
I am enjoying time on my own, having friends round and going to the cinema, because he never enjoyed company and since meeting him 45 years ago, I have not been to the cinema because he never wanted to go.
Having said all that, I miss him as he was, not how he is. He has lost 3 stone in weight in 7 weeks in hospital, because his brain doesn't tell him to eat and they discourage visitors at meal times.
I feel resentful that I had to give up my life to look after him when he became ill 10 years ago and then more so after his stroke nearly 3 years ago which is when his dementia started.
He is due to come home soon if a care package can be put into place. This will be 2 carers coming 4 times a day. They wash him and get him dressed as my back is in a bad way.
I will not be able to leave the house to shop or even go to the doctors now that he is so much worse than before his fall.
When I said yes to ' in sickness and in health' i was thinking more of colds and flu...not wiping his bottom. He is a proud man still, and he hates his life as it is.
Since he has become really ill, everyone I talk to has a brother/sister/ mother/father/ nan or grandad with this awful illness.
I know it will get worse and he will have good and bad days.
Thank you for this forum.
 

Mudgee Joy

Registered User
Dec 26, 2017
665
New South Wales Australia
Hello @Violetrose, I see this is your first post and maybe it will be the first of many as this is a friendly and supportive place. As you have been a member for a while you may have seen this already, however, as you mention some communication type problems I wonder if this thread may be of some value to you https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/

In relation to the loneliness, I wonder if there is a Memory Cafe or suchlike near you where you could chat with people in a similar position? You will find details about your area if you click the light blue box in the top right corner of the page that reads Alzheimer’s Society and enter your post code on the new page
It’s good to re read those strategies !! It’s so easy to forget that your partner has a super bad memory!! (Sorry bad pun)
 
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nae sporran

Volunteer Host
Oct 29, 2014
6,328
Bristol
Welcome to TP @Newness, I'm sorry you find us and make your first post in such horrible circumstances. You will get plenty more support and advice as you need it, just keep posting.