A view from the other side. Trying to care for a carer…

Izzy

Volunteer Moderator
Aug 31, 2003
74,446
0
72
Dundee
Hi there. Really just agreeing with everything others have said. My mother came to live with us around 4.5 years ago - before she had shown any signs of dementia. She was 88 then, 92 now. She now clearly has dementia of some kind. My husband has Alzheimers but functions really well given this fact. I have to say that no matter what help you get and how good family members are (my brother is a great support) it is really really hard. I was wakened at 4.00 this morning by mum. She has an infection and a bad pain in her side. She needed someone to reassure her and get her back into bed etc etc. I work full time and at this minute I am still at work but using my own laptop and dongle to look at TP. If I'm being honest I am delaying going home as I know that I won't get much peace there and I am really tired. My husband has been really good and he gets on with her really well. That doesn't change the fact that we have great constraints on what we can do and when we can do it. In some ways I worry that it is meaning that I can't give Bill the attention he deserves while he is still in a reasonably early stage of AD and that when mum goes it might be too late. Having said all of that I think I won't look at a care home option until I know that she doesn't know me or the family and won't be too aware of her surroundings. I say that now but who knows. We didn't do what you are doing and think it all through carefully. I think you are very sensible to do this and wish you the strength to cope with whatever is in front of you. Sorry for the rambling reply. Izzy x
 

uselessdaughter

Registered User
Jun 8, 2009
249
0
West Country
Thanks

Thank you all for your responses to my post this morning – I can’t believe how quickly some of the replies came in. This is truly a wonderful site for those dealing with this terrible illness. I would like to answer some specific points raised. Thank you so much for your support. Sorry I haven’t worked out yet how to do the Quotes!
__________

Amy2512 -Would your FIL quality of life be massively improved by living with you? Would he be happy, content, safe even? Is your house safe for him, is it secure?

Yes I am sure his quality of life would be improved as he is currently on his own for most of the time and would have constant company as he cannot be left on his own in our home. He would therefore be safe and have his daughter catering for his every whim!!! Yes I think that would make him happy! What it would do to the rest of us I am not convinced of.
________

AmyJane1 - Also I noticed that your FIL has a son who lives locally. Why has he not suggested that your FIL live with him? Or is he of the same opinion as you? If so, then this can also be brought to your wife's attention, especially as he is doing the week in week out caring..... Maybe it's time to ask him what he thinks?

My BIL already has five people in a three bed house and I’m not sure FIL could in any case cope with living with three children between the aged of 8 and 15. They are really good with him and know they cannot run around and make a lot of noise when they are at Grandad’s, but you couldn’t expect them to be like that all the time. BIL is of the opinion that FIL is getting to the stage of needing residential care as there will just not be enough hours in the day for him to fit everything in as things progress, as they surely will. His own MIL has heart problems so his wife spends a lot of time supporting her.
__________

lin1 - If it was your mum in same situ as Fil (god forbid)how would you feel?

Lin – this would never arise with my Mum because she has always made it clear the she did not have children for the purpose of being looked after in old age and has made my sister and I promise to make sure she is comfortable but never, ever, under any circumstances move her in with either of us!
_________

Martina - You would "bond" again with your brother.

Martina there have never been any problems between Linda and her brother regarding what each of them are able to do for their father. BIL is more than happy with what we are able to do when we visit– time and family constraints just mean that there is just no way he can possibly fit in anything else. He is in the unfortunate position of only being able to afford to take a holiday every three years but we always look after FIL when he is away.
__________

TinaT - Why oh why do people think that a care home is to be avoided at all costs? If it is the right care home with good staff and if the illness needs 24 hour care, then where is the problem? Who oh why do people think that it is a form of abandonment when an illness forces care to take place in a care home setting?

Tina, we both feel that care homes can be great places. My uncle was in just such a wonderful place and although it is nearer to FIL rather than us we know how good it is and it would probably be our first choice should it come to that. The problem is that FIL is DETERMINED that he is NOT going into a home. Even warden assisted accommodation was out of the question as far as he is concerned. That is why Linda feels she cannot put him into care as he would see it as the ultimate betrayal. Personally I would be only too pleased to go into such a home if I was in the same position. It is truly lovely there in beautiful gardens with fantastic staff. On the plus side, even if he was not nearer us he would still be able to see his beloved grandchildren on a regular basis and we would visit just as often.
________

Beverley - don't force your wife to put him in a home.

Beverly – I’m not forcing anyone to do anything. We are just trying to find a workable solution for us all before something terrible happens, either to FIL or my wife.
__________

Sorry again for the long post and for not replying to everyone individually, but I (we) truly appreciate all your views. I just hope that we can come to some compromise before much longer. Thank you again.


Keith (and Linda)
 

Kendra

Registered User
Jan 26, 2010
43
0
Keith and Linda
This awful disease devastates families, doesnt it?
Just a few thoughts from me-
Before your FIL became ill and unable to reason clearly, would he have wanted your family to have this stress?

Even if he did come to live with you, no way could you guarantee a completely harmonious atmosphere, there would be undercurrents of resentment no matter how hard you tried. You would both be tired and tend to snap at the demands and interruptions.
Whereas visits to a care home could be happy occasions with no time taken away for personal care or home maintenance.

The disease makes people so unaware of their capabilities, and what others have to do for them.
I am sure you would both prevent FIL from driving dangerously, because it could harm others
and from cooking dangerously, or taking the wrong medication because he would harm himself.

I think in this case you need to organise a care home for him, and prevent him from harming your loving relationship and retirement years.
I am sure that if he was not so ill he wouldn't want this either.

Kendra
 

Bristolbelle

Registered User
Aug 18, 2006
1,847
0
Bristol
Mum lives with us and......

I would not advise anyone to make this choice. I was not going to lose the sanity of working as I was already a carer, we had our own selfish reasons for moving as we used to live next to the neighbours form hell. Our old house did not lend itself to being extended and if we had moved Mum to our house she would have been further away form the local shops etc anyway. As it was Mum was eligible to buy her house so we sold ours, bought hers and extended it withb a granny annexe.
Now here I would say even if you have forty two bedroomns if you only have one lounge think really hard, or plan to extend or convert a spare room inot a private lounge for your FIL if you do move him in with you. There is NOTHING as irritating as not being able to watch your programmes, or hold the conversation you are used to having, worrying about tidiness etc because you have a "guest".
On your wife's side I would say this I TOTALLY understand the love and loyalty issue, but your husband is number one. The other point I would make is YOU(Linda) are equal number one and you may be making this decision for your father now but once the condition gets a grip and you can nolonger hold a good conversation, have to cook all his meals do his laundry etc etc, there will be times you resent the input despite loving him - I know! Another thing a lot of dementia patients develop poor personal hygiene and you can not drag them inot a bath/shower, if they have incontinence they may have a bit of a smell too - sad but true. It's very hard to sit with, let alone eat with someone who doesn't smell to fresh. I hate the resentment and tiredness I feel. I would love to feel I am visiting my Mum for quality time.
What if FiL become aggressive, or makes accusations, if you are divided on the issue of who should care for him now then will you be united on other issues? If he starts wandering at night how will you catch up with sleep?
We had a secret ballot when we moved in with my Mum so no one would feel bad if they voted against the move (one no would have meant no move) I'm pretty sure although we all love her dearly if we retook the ote today it would come out very differently. Not because we don't care, or we don't love her anymore but because despite all the books etc none prepared us for how life changing this would be.
When you have a child the dependency (with luck) decreases and thing look brighter, with Alz there is no bright horizon.
So why haven't we arranged for Mum to go into a care home, well legally we can't as she is still judged to have capacity to make decisions over her care and technically although we pay the mortgage and used the money for hte sale of our old house to move here it's her house. Emotionally she isn't really ready and neither am I, fortunately I have a wonderful family who are not pushing me in this way. Lastly I promised my Dad I we would look after her - though I know if he were able to tell me so he would say it's ok to give up if I can't cope.
There is a definite effect on my health. At a time when I was hoping my children are older and I could go back to work I am stuck caring again.
We all have to make the choice we feel is right, for us our partners/children and other loved ones. Just make sure you do it with your eyes open. Good luck.
 
Last edited:

lin1

Registered User
Jan 14, 2010
9,350
0
East Kent
Caring daughter and Keith

Whatever choice you make,make sure it's the right one 4 both of you.

As has already been said if you do decide 2 have dad come live with you, make sure you in in2 it with your eye's wide open.

my experience and from reading other peoples threads here is you often DONT get the help and support you should, it's hard enough looking after some1 with this awful disease without the battles with the er um professionals.

I hope we have helped in some way.


love and (((hugs))) 2 you both
 

NewKid

Registered User
Mar 26, 2009
367
0
Warwickshire
I have been so moved by the original post - so caring, supportive, open-minded and well intentioned - and the replies which, as one always expects of TP, are genuine, kind and wise.

Coming from many viewpoints, it is so understandable that 'caring daughter Linda' should feel guilty. I admire your understanding of that Keith - I am a 'caring daughter' too... but always conscious of my family and their expectations and limitations - mine too. (Bottom line I have not/ could not do what so many here have done and move in my Mum. The thing that would tip me personally over the edge is 'bodily excretions' but there are many challenges.)

People on this thread have been brutally honest about how this is a degenerative disease - I cringe a little and die a bit inside as I signed up a year ago and found it harsh being confronted with such reality. The good (ish) news .. I have learned to accept (kind of) each deterioation - though there is a lot of crying in my kitchen and wine poured sympathetically by my other half. Sorry, but the deterioation is real. :( I agree that a GOOD care home - and finding one you feel happy with and staying involved will be a big commitment in itself - can give you quality time with your loved one. Why not take the best, and treasure it .. the love between child and parent will always be unique. I hope you both get some peace in your relationship soon.
 

Margaret W

Registered User
Apr 28, 2007
3,720
0
North Derbyshire
Well, Keith and Caring Daughter, what a lovely pair of people you are. I am left feeling humble to read how you are both genuinely working together to find something that suits you both and am impressed that you have taken your wife's advice and asked for people's opinions on here.

I could write a long post (am known for long posts), but can't really add much to other people's comments. I'd just pick up on the possibility of lack of company for your FIL. If you bring him home, you'll be responsible for that 24/7. At the moment it might be "only" 16/7, but will he be meeting men and women of his own age? Will you be able to arrange physical and mental stimulation that suits him? Will he be locked in the house when you aren't there? Would he resent that, if he felt it was his home? Would he have any friends to visit him?

I am still coming down on the side of a Care Home as meeting your FILs needs the best. Your wife might not be 100% happy with it, but let's say 95% is good enough. It's a hard decision, and all credit to you for weighing it up thoroughly.

Let us know what happens, please. You are part of our family now.

Love

Margaret
 

TinaT

Registered User
Sep 27, 2006
7,097
0
Costa Blanca Spain
Just a thought on your father in law's absolute refusal to consider a care home.

Explain to him that you and your wife are going on holiday abroad for a few weeks and that he needs to go to a good hotel where you know he will be properly looked after whilst you are away. (I'm afraid 'white lies' can smooth over many a difficult situation)

Ask him would he like to spend a few weeks at a hotel you have found which would be an excellent place for him to stay whilst you are away. Point out that that he needs help whilst you are away and that this hotel gives extra help which he might need.

If he gives it a try, you never know, he might find that he has enjoyed his stay and you could prolong it, or at least book him in every so often to give you and your wife some rest.

xxTinaT
 

uselessdaughter

Registered User
Jun 8, 2009
249
0
West Country
Linda back

Hi all

Well, it looks as if I am truly outnumbered;) I know you are all right but it is so very hard to see the life he is living - well existing really. We have tried to get him to go to a day centre for some stimulation, no dice, even if he continually complains of needing company. Unfortunately most of his friends have passed on and as he never made any attempt to keep in touch with others after Mum died and before the memory problems kicked in, he is pretty much on his own apart from the immediate family. Added to which you could have the entire cast of 42nd Street tap dance their way through his living room and 10 minutes later he would still complain of never seeing any one.

Tina - At the moment Dad would know the difference between an hotel and a carehome - he is not that far gone yet and would still be judged as having the capacity to decide. But I so want him to be somewhere he is not so isolated.

We are off to see him tomorrow for the weekend and I will have yet another go at trying to make him understand we only have his best interests at heart but I'm not execting any great change. His aversion to going into care is too far ingrained I think. I have discussed it with his GP who has known him for a long time and he is also of the opinion that it will take something drastic to happen before Dad changes his stance. As the GP said, it is often what happens in these cases - we will just have to hope it is not too drastic:eek:
I'll let you know how we get on.

Love and hugs

Linda
 
Last edited:

Amber 5

Registered User
Jan 20, 2009
890
0
64
Berkshire
Hi Linda,
I'm sure you know that all the outnumbering is meant in a totally supportive way! The real problem is obviously going to be convincing your Dad it is a good thing to do.

I was quite traumatised with worrying about how I was going to get my mum into care as she was also very against it. I didn't take her with me to see the first few care homes (luckily as they were pretty awful in my opinion). At the time, I knew I couldn't do that to my mum.

However, eventually I did find one that was set up in a way that doesn't pressure her into anything and was very presentable. People are very kind and ask how she is, remind her of meal times, check how she is, include her in activities if she wants to be included, will bath her if I'm not around, etc. Eventually they will take on more 'care' of her - but her introductory period has been mostly calm and I couldn't have asked for better really.

There have been times, especially at first, when she seemed a bit miserable and doesn't particularly like the fact that there are 'old' people around, but with regular visiting and pleasant outings, positive encouragement, she seems to have passed the more negative stage and sometimes even cares about other residents.

It's difficult to know what will work for your Dad, you know him and how he reacts, (although sometimes they can surprise you!) Try not to pressurise him at all, but don't give up. Have a look at potential care homes and if those words 'care home' aren't used, just maybe he'll slowly warm to the idea.

Wishing you all the best.
love Gill x
 

NewKid

Registered User
Mar 26, 2009
367
0
Warwickshire
Hi Linda, welcome back and good luck with your visit to your dear Dad. I don't want to be alarmist but often something 'drastic' has to be the wake up call ... and for all concerned better pre-empted if possible. My Mum was a very tricky customer too.. would never have bought the hotel bit either, I think she now believes she is a volunteer at her CH. Which we never refer to as 'Care Home' - cos she would hate that.. all complicated but all advice here well-meant and helpful?
 

Maggiemay

Registered User
Mar 26, 2009
120
0
YORK, UK
Dear Linda and Keith,

Tricky times for you and so so hard. I know what you are going through.

There was no way we could have had my Mum live with us.


So hubby, me and brother were in a similar dilemma with her as you are now facing.

She is now in an Extra care living facility because she was so

isolated living alone. We are still experiencing hard times with

her even though she now has company around her.

You sound very loving people and I'm sure you will come up with

the right solution ....