My wife in care home doubts?

[carer13]

My wife is in a care home has been since April 2016 after she attacked me and was sectioned taken to hospital and then after a month into the care home.
We have been married 45 years and 8 months until this year never apart for more than a week. Two children three grandchildren my wife slipped into dementia from around 2009 when the family noticed her strange behaviour. I was working full time looking forward to retirement and being able to make her happy by doing things together.
Unfortunately it wasn't to be I took early retirement a year before my wife's diagnosis in 2013 spent the next three years careing for her home thought I was helping obviously not I nearly got me head bashed in for my trouble. Since my wife has been in the care home she seems healthy except for her arthritis and thyroid which she takes regular medication for(except when at home where she forgot and wouldn't allow me to remind her or take over administering them for her) After her diagnosis in 2014 she wasn't prescribed any medication to help with her dementia at all? even though I queried it. Whilst in the care home they take care of the her medication and ensure she gets it(so I am told.) I have many issues with the situation of my wife is in! The care home staff are luckily for her very kind and do what is required up to a point. Now I have been told they are cutting staff and putting those workers left under pressure. Because of my wifes very awkward ways she is a hoarder paranoid and suffers anxiety on a continued basis. She is on medication that is at its limit for her dementia taking mementine and resperindone 25ml day max that Community Psyichriatic Nurse will allow.
This has made her more manageable for them I can honestly say that I miss her so much
and find visiting traumatic as she "plays me"as the care workers say. Demanding to know how long has got to stay in the care home etc is she going to die in the care home etc.
How would I like to be in her position etc. When she went into the care home the children attended regularly and the grandchildren my son and daughter-in-law live only half a mile away and on who's insistence she was put close to them "so they could keep and eye on her etc" Guess what they don't I am the main visitor and my daughter lives 45 miles away and visits once a week. Now I am being asked to collect more and more to take her to places on my own so I am still the main carer. Sorry if this has turned into a epic but it is only a bit of what I have to do, keeping am eye on the care home the new GP the CPN if not followed up by me it doesn't happen. I know the care home should be doing these things and they don't I have looked around and found seemingly better care homes nearer to me in my village close by etc. I took my wife after the first bout of low standard caring after three months they upped their game but in no time at all dropped it back to sub-standard. When my wife was taken to the alternative care home she"flipped" and wouldn't go there because of "all the old ladies there with white hair who stared at her" got into a state even though it was in the village where we had lived for 31 years and a mile from her old house. So my threat to move her cannot be done because it upsets her and I am sure her present care home are aware of this! Empty threats carry no substance I have informed the local council who part fund the cost and the balance comes from my wife pension they are sympathetic and want know as do the CQC but what to do?
What I am asking is can the funding provided by the council be used to fund a home care service in her house where I live, is it wise to be thinking this way or do I just carry on with the substandard care home she is in? She has early stage dementia but little has changed she has got better but will she revert if put back in our home? Even though I could provide constant care with regular visits from one of the carer services that do this.
Helping Hands who claim to be dementia specialists is one. Quite honestly I am on duty like the police/fireman and awaiting a call to action. I have had not had more than a week away in 10 years because my wife wouldn't leave the house overnight. I am wearing out!
I have counselling, reki hynotherapy the lot. I used to like going fishing I use to like gardening I have managed to have some adult swimming sessions one hour a week.
I use to have friends, funny as soon as it was announced my wife had dementia her friends disappeared mine too. All I can ask the many carers doing what I do for their loved ones we know we care and will continue to.
Merry Christmas and Happy New Year to you all.

 

[Bod]

Hi
I don't think moving her back home with you, would work at all, even with care coming in, you would be "on duty" 24/7. You would soon suffer.
In order for you to do the best for her, you must look after yourself, something that is easily over looked.

Moving her to a better Care Home, would be difficult for her. But remember, her short term memory, is not good, so she would settle at a new place. (It may take some months.)


Bod

 

[AlsoConfused]

What you've already said indicates it's be dangerous to your safety and well-being if your wife came home and you and the carers would struggle to look after her properly and safely.

After such a long and close marriage, you're bound to miss her very badly now she's not living with you. It's difficult to make good decisions when life is so painful.

How about taking a little more time to research and evaluate the different options you've got - keeping your wife in her present home (but monitoring her care closely and complaining when necessary) or moving her to a new one (and if a new one, which home?)?

 

[Nut]

Dear Carer13
Your post moved me very much. It sounds like the wife you knew and loved is already lost to you in many ways, yet you still have so much responsibility and anxiety but with none of the joy, comfort and good stuff that comes from loving someone. If your own happiness and wellbeing came from your marriage, how to come to terms with the loss of your wife as you knew her and the sustaining nature of your marriage can only be guessed at, and can only involve lots of pain and heartache. My heart goes out to you. When I visit my Mum she can be thoroughly unpleasant and says the same things about not staying in the care home. I understand how very very distressing this is, particularly if you don't have confidence in the care home.
I think a significant part of dementia is "associative" I.e. They see X and say Y every time, and then they see Q and say Z every time. My brother was equally part of the decision to get my Mum to go into a care home, but she has developed a different narrative with him. I am slowly coming to realise there is not a lot of meaning or understanding behind her words, and that to listen and act on them or do as she asks is just not in her best interests.
One very helpful piece of advice given to me on TP was to talk openly to the care home manager about how I was not coping emotionally. It helped, it really did. He was super supportive. Could you perhaps try that?
Another tactic you could possibly try is to be very open with your family about feeling overwhelmed with responsibility and possibly grief over this ongoing situation.
It seems to me that returning your wife home with help from carers would have very negative consequences for you, your health and your mental health. Dementia seems to cause more havoc among the family members than the person with dementia!
Another tip I had was to visit less, a lot less. Although I can feel a bit guilty, it helps, it really does. I can feel myself getting back together. And as I will have years of visiting ahead of me than can only be a good thing.
As for moving your wife to the home near you, again I would suggest a whole family discussion where the pros and cons are identified and ironed out. The impact of longer travel for you is significant, whereas if your wife were nearer you might be tempted to visit every day and this might add to your sense of overwhelm. Just because your wife did not like it on one visit does not mean it should be ruled out. Sounds like social services will need to be involved too if they are paying the fees.

I really and truly wish you all the best.


Sent from my iPad using Talking Point

 

[carer13]

No change in my feelings wife still in care home no movement for her.

Can I say Thank You to Nut Also Confused Bod for replying to my post 22/11/16
My sincere apologises for not doing this sooner. I had the christmas from Hell because all relatives far and near wanted to see me and my wife but none would visit us.

They either expected me to arrange either some where they could come and visit. But all wanted to visit different times days etc or just 'pop' in I went for the latter as it seemed the best option as we have no young children or pets to worry about. And they have both I would do a round robin trip by visiting my son xmas eve my daughter Christmas Day My elderly mother my brothers who have 8 children and 5 grand children 11 dogs and a stray cat between them. On Boxing day I couldn't get through to them that my wifes state needed some care so every night returned her to the care home in a state of bewilded sundowning then returned to my home to sleep for the three days. Also ran up 300 miles of driving couldn't partake in the drink offered at every stop( Do people lose all reason at Xmas ). The it occurred tome me one brother and sister-in-law have come and visited my wife in the whole year she has been in care. What it brought home to me that unless you are in my and many others positions people have no idea or do not want to even think about it why it just isn't worth the trouble. Families!!!!

I do hope you had a proper Christmas and enjoyed it.

 

[Bod]

Wow indeed!

Lesson No. 1
Look after No.1 (That's you)
You can't carry on like that.
Your wife will need the peace and routine that the home provides, visitors welcome, but to take her out, too often, will be very unsettling.
Lesson No.2
Look after her.
Lesson No.3
All the rest, as and when.

Bod