Care at Home

[John Mcfarlan]

Hello

My wife and Iare 69. She has been diagnosed with Undetermined Cause Dementia as I asked the Doctor not to put her through hospital tests if she felt there was no effective treatment. It's Alzheimers given the symptoms but she is in denial and I see no point in making her confront this as she is currently quite happy. She can't cook, drive, operate a phone or make a reliable cup of tea and I have to organise her clothes, bathe and cook for her. She doesn't remember yesterday or where she worked and spends a lot of time making sure she knows where her hankies, comb, specs and sunglasses are. When she loses something (Often) I basically let her get on with looking for it unless I can point to it .We have been together since 15 and frankly, I am happy now I've come to terms with it and learned not to get impatient or try to use logic if she wants to buy more shampoo at the supermarket when we already have about three years supply.

She still enjoys the moment: TV comedy, Meals Out, Holiday Sun, Family gatherings, Goin to Shows etc and we are ticking off places to see and things to do while that remains the case.

I spent years building a business with her looking after kids and home so I am OK with the roles are reversed. It feels very much like being a single parent to a 4 year old with time running in reverse. I am fortunate in that she realises she needs my help and is grateful for it. We have been together since 15 and I quite enjoy looking after her. But I am worrying about the later stages. I very much want to care for her in her own home provided I survive long enough. She hates meeting new pe. Sle and socialising with new groups. So a care home would be her idea of hell. I have made the appropriate arrangements in my will and POA . But we can't predice how long we both live.

I read this forum with so many people having a bad time and looking to place their OH in a home at the end and wonder if anyone else has experience of caring for their loved one at home once they are both older and what preparations they feel would be appropriate.

 

[Moranie]

Wife 62 & I'm 69 and to be honest thought I had written this!! Can relate to everything you say, the futures scary - I'm on my own - but she is going no where but home. Most important thing is for you to get support, occasional respite from friends and have no great expectations......just lots of patience & tolerance. Might be worth checking out what's around locally with regards Carers Support Services
I wish you well

 

[John Mcfarlan]

Thanks. I hope you are well supported. I don't know how far down this path you are but I wonder what preparation you have in place for home care?

 

[JackReacher]

Hi John, looks like your questions have not had a response? I hope you and the boss are doing ok at home.
Not sure whether I will be helping or not with my own reply.
You sound very much like me. My wife is now in a care home down in Lewes where my daughter lives, able to pop in and chat with her mum regularly. I am no longer remembered as a hubby after 49 years of marriage and I now live a good 5 hours drive away, bought an identical house to where my wife grew up and 11 doors away, in Lincolnshire. I could not remain in the former house in Norwich as too many bad vibes.
So a fresh start for me and the dog!
But I miss my wife desperately. My needs are secondary, I know that. I have refurbed the house and its now brilliant ... but I so wish my wife was here to use it.
My wife is on the move. Her care home say her deteriorating behaviour requires a nursing home, so we are checking all over. But with the cost of a placement being sky high, I wonder if it just might be possible for her to be supported "at home" here instead? I know things are heading downhill and I am no Spring chicken anymore. 3 doors away is a person living alone who has carers popping in 3 times daily to see to his needs. So perhaps rather than spend a huge sum on a nursing home, I am wondering if a home care with support might work?
She has never settled in the 14 months so far in a care home, always wanting to go home and I always feel so guilty when leaving.
We married for life and through thick and then, and I want to do what I can for her in her darkest hours and give her back some love and care in her own home.
But is that workable? Liam

 

[canary]

Hello @JackReacher

It must be very difficult for you being so far away from your wife. I can understand that you miss her and want her back, but you will be thinking about her the way she was.

Her behaviour is now such that even a care home with carers working in teams around the clock cannot cope with it. If you brought her home the maximum care package that she would probably would be 4 half an hour visits a day. This would leave you on your own with her for 22hrs every day with behaviour that the care home cannot manage. She no longer recognises you, so to her she would be living in a strange house with a stranger and would almost certainly be still asking to "go home ", because what she is asking for is to go back to a time and place before dementia.

Wanting to give her love and care in her own home is admirable, but sometimes love is not enough

 

[Janey B]

Hi John
I also could have wrote your post and relate to everything you say.
I really want to keep my other half at home ( late stage FTD) but life is hard. I get upset when changes happen and initially find it hard to cope but eventually there is a solution and I am able to carry on.
We are lucky in the fact that we built an extension once he was diagnosed and we are on a level with walk in shower etc.
Recently received a profiling bed from OT and that has been a god send ( he kept falling out of bed)
So on we go not knowing what the future holds.
He use to go into respite every six weeks so that I could spend time with my children and grandchildren but the care home won’t take him anymore and that really upset me. It was a nice place and he enjoyed going.
Found it hard to transport him there so have decided to have home care for my breaks ( it will have to be less often now because of the costs)
Have carers coming in for mornings and evenings and I feel better for it. It is the same carers that will do the home care when I am away. So as long as the money lasts hopefully we will be ok.
Sorry aware that I have rambled on and not sure I have been of any help to you but I understand your intentions and I’m sure it is possible and that solutions can be found. So take care and request help when you need it JB