The loneliness of living with dementia

[Optomistic]

Caring

Hi Sunseeker,

I know how you feel have been married 44 years but now its like living with a stranger. My husbands speech is affected and memory he takes Aricept which worked well but he had a fall four weeks ago, His understanding his worse and speech very limited we used to have lots of nice chats. I take him out everyday just to see other people we go to bingo or round the shops. His walking his bad and he has a stick now but it breaks the lonliness up. In the house i feel isolated he doesnt like Alzheimers cafes says its for carers not patients. Ive never had respite but my son took us to London for the weekend it was hardwork but i enjoyed it.

 

[canary]

My OH wouldnt go to a dementia either, but he is happy to go to a couple of coffee mornings which, although not specifically for PWD, actually have several PWDs plus their carers and some ex carers. So there is a lot of understanding, he enjoys it and it gives me a break. I think that as the disease progresses he would probably not understand what a dementia cafe was and would be happy to go - so long as I didnt call it a dementia cafe!

 

[Clunchman]

Well these post have helped me see I am not the only one in this situation. My wife diagnosed with vascular dementia 3 months ago and seems to be getting worse fast. She will not have anyone except one family member stay with her so I can get out. He is rarely here. My pleasure in life has always been riding a motorcycle, she rode as well, but obviously not now, but I am lucky if I get 1hr a month to ride it. The upset and unpleasantness if I try to arrange someone to sit with her is not worth it and she cannot be left alone. She is also becoming more aggressive. Fortunately she sleeps a lot, so that gives me a little break and I can look on line. But she does not like me asking anyone for help or ideas.
I was only thinking this morning that the harder I try the worse things seem to be. My own health is not good with COPD, post DVT, Asthma and type 2 diabetes.
But I try and take just one day at a time and forward planning is limited to what cannot be avoided.
Sunseeker, I hope things get better for you, at least my wife knows who I am, yours is indeed a most distressing situation.

 

[Clunchman]

I meant to add, thank you for your post Sunseeker, as it has been a help to me, both that and the replies you have received.

 

[Sunseeker1977]

As I said in my original post I knew I was not alone on this journey that we are all regretfully on, and it really helps to share experiences! .. the impact this dreadful disease has on us really has to be experienced to be truly understood!

I have just had a respite break, my wife staying at what we now call 'the weekend spa' its a lovely place and she is well cared for!! I decided to visit my friends in the Canaries for a few days ... a bit of R and R and winter sun!! Its the first time I have been on holiday without my wife and it was a surreal experience ...... I am not sure whether I enjoyed it or not! I found my self being envious of 'normal couples' having a nice time!! I found myself staring at the empty chair next to me in the restaurants ... and thinking of times gone by ... and just how short life seems when reflecting on many years of happy marriage. Conversely it was nice to have a break from the intensity and frustration of my life as a carer, and having returned batteries recharged ready for the next battles!! ...... It brings you back to Earth with a crash ...... missing her and looking forward to seeing her ... only to be greeted with the usual vitriol and abuse!! Until the next time!!!

 

[Clunchman]

You have expressed exactly how I feel Sunseeker. On the rare occasions I get out for a ride I could stop at a coffee stall, chip shop or pub. We have done these things together for 47yrs of marriage and they seem empty on my own. I wish I had a clever suggestion, but I do not. Perhaps just remember the good times you shared together and enjoy what respite you can get. (Says he who does not get respite or follow his own advice! )

 

[Jumpforjoy]

I can relate to your situation.

How do you all cope???

Myself and my wife have been together over 45 years ... she is my love .. my best friend .. my confidante .. my soulmate .. the one I could always rely on!! No longer!!

After living with this dreadful disease for over 8 years, she now has no real idea of who I am ... but she is positive I am not her husband!! .. there is no meaningful conversation between us anymore just demands, and what feels like isolation!! Our family are very supportive and they visit regularly .. but conversation with your children is just not the same as conversation with people of a similar age ... our memories of our life together are now only my memories!! ... its so sad!

I have a long time friend but he has a very demanding job and I don't wish to appear needy ... I have always been the strong, confident, self sufficient type, and would never be seen to be weak!! However I find myself missing the company of people my own age .. the odd pint, a chat ... a holiday!! things normal retired people do!!

What has also surprised me is just how uncomfortable people can be around dementia ..many of our acquaintances ( I stop short of calling them friends ) have dwindled over the years, to the point whereby we might get the odd phone call and a christmas card!!

I am not in a position to join any organisations, due to my caring responsibilities, my free time is erratic!!

I am not feeling sorry for myself, I know many other people are experiencing exactly what I have described, and i am very fortunate in being blessed with the support of a fantastic family.... but just sometimes it would be nice to feel normal!!

How do you all cope??

I too have become very isolated. Living with a partner with early onset dementia which has progressed rapidly is difficult and distressing enough but to find out that people you once used to call friends don't even bother to ring let alone visit is very hard. I note that you live in North Yorkshire . Have you been in touch with Dementia Forward? They are an excellent organisation and have been very supportive to both of us especially in the earlier stages of the illness.

 

[technotronic]

I too have become isolated looking after my wife who has Early Onset Dementia, since giving up full work to look after her all the time.
She had become nervous n frightened at being left alive me all day while I worked; she had on a number of occasions asked me if I had to go to work that day, and after I had said I'd stay with her she insisted I went to work n she'd be ok.
The day she asked me not to go to work I knew that she needed me to be with her all the time, to which I said that I would which pleased her very much. Having appraised my boss of my wife's condition before handed he was very understanding n agreed to my leaving on a days notice.
Since that day two years ago we haven't had any of her friends ring or pop round to see her at all, her 'best friend across the road seems to have abandoned her, never ringing or popping over to see how she is.
Only time on the last two years that she would go out, n at great persuasion, would be to go shopping but at times when we did we didn't get any shopping as she got too frightened to go into the supermarket once we had parked n insisted on going home straight away.
There were occasions that we did manage to get some shopping....


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[technotronic]

....though. It eventually got so bad with her getting confused n frightened on our return home n not knowing it was ok to get out of the car n go into our house, that I signed us up for Tesco's Online delivery service to have shopping delivered, which has worked out very well n eased her fears of having to go out considerably.
She wants no outside help or anyone calling round anytime, n only wants me to be there; our home is her safe place.


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[technotronic]

We did manage three surprising trips out in September though with her feeling a bit more enthusiastic about going out, even went into builders merchants n supermarket with no problem. But with Dementia being an ever changing n progressive condition I know we may not have too many trips out like that very often.
As a bit of a loner not seeing people doesn't worry me it's affect on wife I worry about, but the feeling of isolation can feel very real at times.


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[technotronic]

Coping with it is taking things day to day n adjusting as best you can to what's needed, in putting her needs first at all times above anything that you wish to or want to do, that's how I've coped for the last two years.


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