Can you help me?

[Ruthy]

Hi everyone.
I posted a letter under the heading 'Care' a couple of days ago.

I can no longer go on caring for my mother at home and I need to find her some long term accomodation. I have not got anything organised yet, but I will be doing it immediately. The question I have is how to tell her. Or not. I have said that soon, the doctor might be taking her into hospital for a couple of weeks but I don't know how to tell her she won't be coming home. This is the hardest thing I have ever had to do. and the most painful. I would be so grateful for any advice.
Thank you,
Ruth.

 

[Brucie]

I do feel for your predicament and I have to say I found the best way was to say nothing, just treat the move as something quite natural. I used the doctor story as well.

Perhaps I was just chicken, or perhaps I sensed that this would be the best way for my wife.

At my wife's home, there are people who are always expecting to go home, and who ask bus times, or when their relatives are coming for them. From a carer's point of view this seems just awful, but in truth, if they are reassured that the last bus has just gone, or that the relatives will be there tomorrow, or even just to wait an hour, then they seem content with that - i.e. they are not badly upset. The memory problems then become an ally because they forget for a while, then you go through the process again, and again,....

I'm afraid with this illness you have to learn to lie and to play act a lot. This is not a bad thing, though it may seem so, but it is done to reassure someone who so badly needs the simplest of reassurances.

My best wishes. None of this is easy, but lots of us have been through it, and the important thing is to appreciate you are not alone.

 

[Lynn]

Hi
I had to take my mom in to full time EMI care home only last week. It breaks your heart as a family but there comes a point when home care even with support becomes just too much. We chose not to tell her until we got there and the manager of the home was just excellent at taking that responsibility in a very fair and honest way.It has been a heart wrenching week for us all particularly my dad who is now at home with the "guilt" of giving her up to others. He hasn't been to see her yet either as he feels too upset and worries that he might wish to bring her home again when he goes.
I am lucky to have a father and 2 great sisters as well as a husband and 2 children who are vvery supportve.
This week has been tough on us and it was really difficult to walk away when I visited yesterday. I know times are going to be really hard....it's a dreadful illness, unfortunately my mom still has great awarenss but an inability to talk as her language has now gone. She has very tearful, almost despairing episides but cannot tell anyone how she is feeilng. The home is absolutely wonderful and I know we wouldn't have found any better, so I hope it will feel better soon. At least I know she is now safe

 

[susan]

Dear Ruthy
I feel for you - i know the pain and the 'am i doing the right thing'
syndrome - but a big but, you can not escape feelings and maybe i can do more syndrome.
When my dad was taken away to the local psychiatric ward - it was the worse day of my life - i dread to think what my mum went through - but we left it too late to get support in and were at a stage of desperation - don't leave it til then, at least get a nice home and hopefully the transition won't be too painful.
There is no easy answer, everyone deals with it in their own way - i just wish i had found this site 3 1/2 tears ago.
When Dad went into hospital, it was very easy to forget all the things he was getting up to and we reached a stage of have we done the right thing - i dealt with it by reading a diary of 'happenings' i wrote before he went in and when i hit a bad patch i used to read it to remind of what mum was having to deal with 24 hrs a day.
I don't think the guilt ever goes away, it just becomes easier to accept - don't get me wrong there are days i still think that we made a mistake, even though he is only a shell these days with no real speech that we can decipher - mind thats the next grief - what is he trying to tell me?
Sadly it is a long slippery slope and no one can turn the clock back, just make the most of those special moments - they will keep appearing intermittently - makes you realise they are still with you. Take care kind regards Susan

 

[adele78]

Hi Ruth and everyone.

My mother is in her 5th year in a home, now a nursing home. Originally, she had to go into an EMI unit and it was heartbreaking. It is of no use telling them the truth as they forget soon afterwards anyway. We just told mother that she would be going home 'soon' and after a couple of days, she thought she was working there. I noticed that some of the others thought they were working there too. It's also true that they do constantly ask when they are going home, the best answer is later or 6.30.

Please don't feel too guilty I think that most people find it impossible to look after someone at home with this disease.

Adele

 

[Angela]

Hi Ruth and thank you for your mail.
I have no doubt that this is one of the most difficult times of your life.
I do agree with Brucie, and under your circumstances, I believe the best way to handle the move to a 'permanent' care setting is not to say that that is so.
If I am reading this correctly, You seem to be trying to remind your Mum that she will have to move home and I think this is making the whole situation worse for you. It's as if you are trying to punish yourself more for something that you have no control over.
I do think that it would be better if you did not discuss this infront of, or too her again. It does seem that your Mum is able to comprehend what you are saying and the fact that she will be moving home, but I wonder if she is able to recall this? Or are you reminding her?
My advice is based on my experiences, and I have found that most people in the middle/later stages of dementia are not able to remeneber and understand that, where they are moving too, or, have moved too is permanant, unless we reming them and explain. This only causes more upset to all involved.
If however you are to take the advise and not discuss it, you may find that the transition to the care home is a little easier . . . its only for "a short holiday. "
I appreciate that to many, this may be seen as lieing, but it is the best advise we can offer.

 

[Angela]

Ruth
I have checked back at your first posting and I have lots of questions for you.
How was Mum diagnosed? Seeing as her dementia came on so rapidly...
Have you had the most support you can possibly get from social services? I'm trying to determind if moving Mum to a care home is your only option.
Please me mindful, you have a family of your own, a supportive partner and yourself to consider too. You are not moving you Mum because you want too, but because her illness is preventing you from being the caring daughter that you are. When she has moved to the care home YOU will feel better, and so YOU will be more able to care for her the way you would like too.
With regards to the funding, I would expect that if Mum is only on Income Support and has little savings, and social services and or the NHS assess Mum as needing either residential or nursing care, then they will pay for this. For personal information, you must speak to a social worker.
I hope this makes sense, and I hope I have given you a little more insight.
Please let us know how you are getting on.

 

[Ruthy]

Dear everyone, thank you so much for your replies. It really helps me to know you are out there. My mum's dementia did come on suddenly. The social worker came to see us on Tuesday and insisted on telling mum what the plans were. Of course, since then we have had a running stream of variations on the theme of 'You are getting rid of me. I looked after my mother and I wouldn't dream of doing that to her' Or something like that. I didn't remind her of this, she just brings it up herself. I wish she WOULD forget for a while as we have to wait till 15th of March to get the respite care.

Mum seems to remember some things, and then brings out her own version of them. Like just now. My daughters are in her room as I ran crying for help after half an hour of "did you not think of asking me where I wanted to go? " and "I want to go to stay in Newcastle where I would know everyone" (we live in Nottingham.) She is crying and lamenting and wanting to die, which is breaking my heart.

I am close to breaking point and I want to run away.
Sorry to wear my heart on my sleeve tonight. I'm not usually so down.
Ruth.

 

[Ruthy]

Sorry about that last posting folks. I won't ever try emailing again whilst in the throes of a stressful situation.
Thank you all for taking the time from your busy lives to help me and those like me who are just taking the first steps on this particular path.
Ruth. (Mum has gone to bed!)

 

[susan]

Dear Ruth
We are all listening and we have all been in that situation, yes have a good cry it will make you feel better. Better off your chest rather than bottling it all up and taking it out on the wrong person. Keep smiling - remember what your mum does remember is intermittent, even though she may revisit the same thing. Sadly you will be the one that remembers far longer than your mum. Take care write soon Susan

 

[Lynn]

can you help me

Dearest Ruthie
Be strong, seek some happy moments in each day, it's so very tough..........................lots of us are all thinking of you right now. My mom has had a couple of bad days in her new home and it's heartbreaking. I don't know what Ill hear or feel like this evening but I have to have the distraction so am about to take my 2 lovely children out for a bite to eat
Fondest thoughts
Lynn