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

[dancer12]

Hi:

I'd stay but I'd make sure I never lose a part of myself by doing things I enjoy.

 

[maryjoan]

This has turned into a really interesting post - thank you all

 

[maryjoan]

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.

I agree totally with you - thank you, thank you for this forum, what would we all do without it? It is a marvel how we can express ourselves without fear of condemnation.....

 

[GinnyJan]

Hi:

I'd stay but I'd make sure I never lose a part of myself by doing things I enjoy.

Unfortunately, this doesn't always work. I used to enjoy going out for coffee with a friend, going on holiday, or even on day trips but all these things are no longer possible as my husband cannot be left alone and doesn't want to do any of these things.

Someone mentions, further back in the posts, that their OH is like a limpet and that is exactly what my husband has become.

I love him and he loves me and at this moment in time, I could not contemplate leaving him but I understand each and every one of these posters.

It is very hard and the thought of the many years ahead where, I have no doubt, things will become much harder than they already are, is daunting and frightening and losing much more than just 'a part of myself' is inevitable

 

[Mudgee Joy]

Sorry a change of subject but just wanted to share !!
A friend of ours - trying to cheer me up- said today : his FIL has D and just turned 101 !!

 

[carolynp]

Sorry a change of subject but just wanted to share !!
A friend of ours - trying to cheer me up- said today : his FIL has D and just turned 101 !!

Oh joy!!!!

 

[mab]

If I thought for one minute that my OH was going to live to 101 then I think I'd HAVE to walk away... whatever the consequences!

 

[carolynp]

Sorry a change of subject but just wanted to share !!
A friend of ours - trying to cheer me up- said today : his FIL has D and just turned 101 !!

 

[carolynp]

I took OH to GP a month ago. Dramatic drop on MMSE etc etc. Then GP asked him, how old was your mother when she died? Of course OH didn’t remember but I blithely chipped in, quite proudly: “Almost 99!” You should have seen GPs face! It hadn’t even entered my silly little head he was asking as a guide to how old OH might be before he shuffled off this mortal coil!!!

 

[Mudgee Joy]

Yes - don’t know whether to laugh or cry !

 

[Mudgee Joy]

If I thought for one minute that my OH was going to live to 101 then I think I'd HAVE to walk away... whatever the consequences!

Maybe time to take up skydiving lessons !

 

[March]

Oh dear, I live with a man who has early onset dementia, I don't know what to do as he is aggressive today. Keeps making messes every where, I am so stressed, My beloved mother has just died and i am struggling with that. I will have sufficient money to be able to buy myself a small home if I move north, I just don't think I can cope with, I feel so bad even thinking about going away, help.....

 

[Izzy]

Oh dear, I live with a man who has early onset dementia, I don't know what to do as he is aggressive today. Keeps making messes every where, I am so stressed, My beloved mother has just died and i am struggling with that. I will have sufficient money to be able to buy myself a small home if I move north, I just don't think I can cope with, I feel so bad even thinking about going away, help.....

I'm sorry to hear that things are so bad for you. I'm glad you've found the forum as there will be lots of people here to support you.

You might find it helpful to phone the society's Helpline and talk to someone there. The number is
0300 222 11 22. The link for more information is here -

https://www.alzheimers.org.uk/info/...55.1769454811.1519233588-549088353.1488398070

 

[imsoblue]

If I thought for one minute that my OH was going to live to 101 then I think I'd HAVE to walk away... whatever the consequences!

Well, I don't think I'll make the next 30 years!!!!

 

[cumbria35]

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.

 

[dancer12]

Unfortunately, this doesn't always work. I used to enjoy going out for coffee with a friend, going on holiday, or even on day trips but all these things are no longer possible as my husband cannot be left alone and doesn't want to do any of these things.

Someone mentions, further back in the posts, that their OH is like a limpet and that is exactly what my husband has become.

I love him and he loves me and at this moment in time, I could not contemplate leaving him but I understand each and every one of these posters.

It is very hard and the thought of the many years ahead where, I have no doubt, things will become much harder than they already are, is daunting and frightening and losing much more than just 'a part of myself' is inevitable

Hi:

How about painting, or reading, listening to music maybe, perhaps taking up a musical instrument. I know my husband needs to be supervised 24/7 also, I need to add to my list of enjoyable activities. There are some I won't be able to do anymore.

 

[cumbria35]

How very true, we have been married for 61 years, they cannot help what has happened to them. Yes it does get you down when you see your life being so restricted and so different t to what you hoped but I am just glad that we are both here. TP is excellent for getting rid of feelings on line and getting some good ideas.

 

[cumbria35]

Replied further on

 

[GinnyJan]

Hi:

How about painting, or reading, listening to music maybe, perhaps taking up a musical instrument. I know my husband needs to be supervised 24/7 also, I need to add to my list of enjoyable activities. There are some I won't be able to do anymore.

Unfortunately my husband has never had any hobbies - he was a workaholic. I'm an avid reader and have tried, all our married life, to get him interested in books to no avail. He won't even read the newspaper any more or watch tv or listen to the radio.

His concentration is zero so I genuinely don't get a minute to myself from lunchtime onwards. It's like having a small, demanding child but harder because I can't just pop him in a pushchair and go for a walk (he's very bad on his legs and takes an age to walk from the kitchen to the sitting room).

I know I sound negative and that is unfair because we still laugh together about things he can remember from the past bit it's so hard when, as yesterday, he asks me who I am and where I live! He was only diagnosed in September....I didn't expect it to get so bad, so quickly. I guess we're still coming to terms with it and this forum is a massive help.

 

[Grahamstown]

Like GinnyJan my husband was a workaholic but he had two hobbies, golf and gardening, both of which he has given up and he has zero interest in doing anything else to replace them. I have tried several things but they have to involve me and it will be me who does it, like bird watching or bowls club. So I go to nature reserves but he doesn’t come. He went to bowls once and won’t go again and it’s only around the corner. If I do take him with me, he gets tires/bored/can’t concentrate/muddled, take your pick. So he looks forward to his drink or three every evening and I have to limit him because it has a bad effect on him. So I worry about leaving him alone after late afternoon and I find this very irksome because I have always been used to my freedom while he worked. I can manage most of the time but occasionally a friend and I like to go to the Arts film relays so I am in the process of trying to find a carer for those vulnerable times.