Looking into care home placement - feel like Judas

[Merrymaid]

I haven't posted for a while, one reason happy one not so. I have been very busy with preparations for my daughter's wedding which culminated in a lovely memorable day last Sunday.

Needless to say Mum was a bit confused with the disruption in the house. I did all the decorations for the event at home & made the cakes (there were 3), on top of this she developed a UTI 3 days before the wedding.

Even allowing for all the changes and resulting upset for her, she has moved further down the Dementia path & I am finding I am extremely wearied in coping with caring for her. I am lucky compared to some here in that there is no physical threats involved, but I am finding the non-stop emotional strain and the lack of sleep draining.

On top of this my daughter is pregnant & has a condition which could potentially prove life threatening for her or her unborn son or both. As my 1st and very likely only grandchild I would love to be there for her, and she wants me there very much. However my Mum will need to go into respite care. The local CH does not facilitate EMI respite which she needs as she will wander. They may however have a permanent bed in the not too distant future, which they are happy to earmark for her. However this brings forward a decision I have been considering for some time, about placing Mum in a Care Home permanently. This CH is within walking distance so I could visit everyday, take her for walks in her wheelchair, take to medical appointments and just be nearby. I know I would be able to get some rest & enjoy my visits with her etc.

However I can't shrug off this feeling like a Judas knowing that I am planning this without her knowledge. I am trying to make decisions that are in her best interests with a clear head, but my emotions are holding me back from taking that final step.

I know ultimately the decision is mine I have LPA for both health & finances in place & perhaps if the issue of my daughter's health had not arisen I may have been able to continue to care for Mum at home for a little while longer. If I am honest with myself though I don't think I would be able to do so indefinitely, I am managing her care but at a cost to my own health. I am feeling isolated & lonely & unable to leave her alone for more than 20 minutes at a time to walk my little dog. Pretty soon I think this will have to stop too.

Gosh this is a long one sorry! Just read it back & it looks as if I am trying to convince myself!

 

[Lindy50]

Well, merrymaid, perhaps you are trying to convince yourself ....and if you are, I hope you are able to make a decision soon

You sound exhausted (not surprisingly) and obviously concerned for your daughter. Honestly, from what you say, the local CH placement sounds pretty much ideal. How wonderful to be able to carry on seeing your mum so often, without having to do all the hard work which is putting your health at risk

You, your daughter and (expected) grandchild would also then get the attention you all so richly deserve. Go for it while the place is there, merrymaid!

Lindy xx

 

[Merrymaid]

Thanks Lindy & Piph for your support, just can't stop the tears right now .............

 

[pippop1]

We too planned my MIL's entry to a care home without her knowledge. It was pretty awful and we felt so guilty.

It tested our best acting skills to casually get into the car (having sneaked a suitcase of new named clothing into the boot in advance) and pretend we were going out to tea. When we got to the home she sort of realised something was up but they gave us all a cup of tea and cake which lulled her into a false sense of security. We left everything in the car and only took it in when when we had "gone".

We then went back to her house and took all the clothes and other items that she might need and took them home to wash/sort through/be named and so on.

All pretty heartbreaking really but now, 12 weeks later, she is settled and seems to regard it as her home. She doesn't ask to go home as she did at the beginning. Having had years of responsibility for her it's an amazing relief.

Your daughter comes first and you have a good solution for your Mum's care. You will still care for her but not quite so hands on.

 

[Witzend]

The thing is, and I know it not invariably the case, but if you ask your mum in advance whether she'd be happy to go into a CH, and she says no, and becomes very upset, then what? If it going to have to happen at some point - and it sounds as if you are reaching that stage - then personally I can't see the point in telling her and maybe upsetting her in advance, though I understand all too well why you feel you ought to.

There was no respite care involved, but we did not discuss the huge CH issue with my mother at all. According to her there was nothing wrong with her - she would have become terribly upset and angry and refused to leave the house, and in any case we had the problem that she was very reluctant ever to leave the house anyway.

Please try not to beat yourself up over this, though it's all too easy for me to say, I know.

The things we would naturally discuss reasonably with someone who did not have dementia, so often become a whole different ball game once you chuck the dreaded D into the mix. Sadly, people with dementia do often become quite unable to see or understand the huge strain they are putting on their nearest and dearest. Your life and health are important, too, and I think most of our loved ones pre dementia would have said the same.

 

[Merrymaid]

Thankyou for all your responses. You have offered some sound advice and reassured me that the care home route can eventually become a positive one. I have approached my social worker and have a pre-arranged appointment with the memory clinic tomorrow. This means I can have some factual assessment of Mum's progression with her AD which will support planning ahead like this.

 

[CJW]

My mother refused to consider a care home and lived miserable, stressed and ill at home for months until we reached crisis point. Since she has been in a care home she has been much happier, loves the company and carers and enjoys my visits. In retrospect I truely believe it is better and ultimately to take the decision earlier rather than later. We all go through the guilt thing, but after a settling in period which can be a bit upsetting for her and you I really hope both she and you will be happier.

 

[Merrymaid]

Thanks CJW. I have calmed down a bit from this morning when the fact that the decision making time was no longer on the horizon but looming towards me at high speed. Hearing that others have had similar emotional responses at this point has helped me feel normal rather than I am somehow failing Mum.

 

[Merrymaid]

You have a good cry - you'll feel better afterwards, I always do!

BTW, have you discussed the possibility of your Mum going into the CH permanently with the rest of the family? You really shouldn't have to shoulder the burden of this decision alone. If they all agree, then hopefully it might help you to feel less guilty.

Hi Piph unfortunately apart from my daughter the rest of my family, i.e. my two brothers live so far away they have little hands on involvement in Mum's care, apart from one week per year when they take her while I take a break. She has been ill for over 12 years & they have only acknowledged her illness in the last two years claiming that 'a little memory loss was normal at her age'. Discussions of Mum's health with my brothers have always been fractious to say the least and when I try to talk about any changes in her condition or behaviour I get the, 'Well I've never seen her like that' or 'She's never done that with me' lines. Obviously if you only see her 1 week out of 52 there is a good chance you won't witness all her changes, but it doesn't mean they aren't happening. This head in the sand attitude has meant we hardly talk anymore, so discussing Mum's future with them is not going to happen. She has lived with me for over 27 years and it has been a priveledge for me to care for her and now I need to step up and make the right decision for her continued well being with this insidious, cruel disease. Thankyou for hearing me out

 

[susy]

Hi merrymaid, I'm looking at upping the care for my dad, putting him in to day care etc. I'm so uncomfortable with it. I am not in the same position as you but I think I feel in a similar place.

 

[copsham]

"and it has been a priveledge for me to care for her ..."

Hi Merrymaid,
If your mother is in a care home you will still be able to have the privilege of caring for her but in different ways. I visit my mother. She enjoys my company when she is well. I ensure she has her hair cut how she used to like it, make sure clothes are replaced, and labeled, put birthday cards in front of her to sign, take her out for a cup of tea etc etc. It is demanding but not like when she was at home.

Your time with your daughter is now going to be so important and precious and must be protected. Good luck with your decision making so hard when you are in the middle of it!!

 

[flowerball1]

There have been so many good positive responses to your question already, but I wanted to share a thought which struck me today, 10 days after mum went into a home.

In the home she has at least 3 carers on the unit at all times, a cook to provide her meals, a cleaner, a gardener, an admin manager, a handyman and numerous other people to engage with and support her. They all go home at the end of their shifts and have friends and holidays and lives. I tried to do all of this and provide daily stimulation and entertainment 24/7 for 52 weeks of the year. I was exhausted, mum was unhappy and no one really had a life. Now I get to see her everyday... we laugh, we hug, we are both still trying to find our feet, but she is cared for by people who are fresh and have slept and will go home to sleep. They may have different ways of doing things... but now I can get on with the job of enjoying what time I still have to share with mum and get back to loving her again!

Good luck with making your decision whatever you decide.

 

[elizabet]

If you have the chance of a place for your Mum in the care home you can walk to and could see her everyday without all the physically stress of tending all her needs at your house I would say GO FOR IT., before you either make yourself ill or there is some other crisis.
It is the hardest thing I had to do for my Mum , the guilt, feelings of deceit, the little white lies but once in the home she blossomed physically, she was safe, well fed and had a happy 8 months of good quality life. I could still care for her - taking her out for coffee and lunch and a change of scenery, making sure her toiletries and clothes were replaced when necessary but most of all having quality time with her, playing dominoes and sharing her new home with some of the other residents and getting to know the staff.
Most care homes have a mutual settling in period anyhow .
Your daughter needs you now, you will have done the best for your Mum.
I hope your siblings are supportive .

 

[lizzybean]

Don't forget that Judas HAD to do what he did!

 

[Merrymaid]

Thankyou!

Thanks to all that have taken the time to respond, your positive replies have helped my thought process. I thought I had a couple of weeks to mull this over but I had a telephone call first thing to say a bed was available now. I had to make my mind up by close of day or it would be offered to the next in line. I took my Mother for a visit and asked them to treat it as such and the staff were lovely, she was soon chatting happily with people. I know there will be a different response from her when she is a resident but I know she will be safe & cared for so I have decided to say yes. I know I have to expect a settling in period where emotions will be a bit all over the place, but I am feeling much more positive about my decision. I will update you when it actually all takes place. Thanks again folks

 

[Wolfsgirl]

Right Decision

I am sure you have made the right decision. The December before my Mum went in the home, my daughter who has two serious neurological illnesses was struggling but did not want to add more pressure to me by asking for help so near to Christmas. Eventually she did ask me and I made her my priority over spending time helping her in a practical way, instead of spending time with my Mum.

My dau felt guilty and the only way to convince her it was ok (and myself I suppose) was to say 'now look, Mum has had 85 Christmases which is about 50 more than you - and when in her right mind, she would want me to put you first'. It worked for me, Mum did not suffer and still seems to ask about my dau and know all is not well...

You will do better for your Mum without the stress. Really hope all goes well with your grandchild who will need mega amounts of spoiling!

Very best wishes and I hope to hear more of how it all goes

 

[Merrymaid]

Hi merrymaid, I'm looking at upping the care for my dad, putting him in to day care etc. I'm so uncomfortable with it. I am not in the same position as you but I think I feel in a similar place.

Hi Susy you may have seen that I have made my decision to go ahead with care home placement. I too was unsure a few months ago regarding day care for Mum. I am so glad I did get her into it for a couple of days per week, as I feel it helped prepare us both for this next step of residential care. Hope it goes well for you

 

[Mufti]

hi

Hello Merrymaid I am at the point of having to make the same decision as you - my partners name is on the waiting list for a local care home and I am so scared and guilty! They are building new rooms in the next few months but if a room comes up earlier, we have first refusal. I am at the end of my tether both mentally and physically - I spend a lot of time crying - not good for me or my partner! All my friends are telling me I'm making the right move as I am visibly sinking but that doesn't help the guilt. I know that for me to survive I need to do this soon. Even writing this upsets me He is sleeping peacefully beside me - but I dread the tomorrows! I'm the sole career and it is becoming too much - 7 years now with the last 2 years particularly bad. Oh I wish it would all just go away somehow. Some days I just wish one of us would die and mostly I don't really care which!! No way to live! So I need to bite the bullet. Hope the care home goes well for you. Take care. Mufti

 

[Merrymaid]

Hello Merrymaid I am at the point of having to make the same decision as you - my partners name is on the waiting list for a local care home and I am so scared and guilty! They are building new rooms in the next few months but if a room comes up earlier, we have first refusal. I am at the end of my tether both mentally and physically - I spend a lot of time crying - not good for me or my partner! All my friends are telling me I'm making the right move as I am visibly sinking but that doesn't help the guilt. I know that for me to survive I need to do this soon. Even writing this upsets me He is sleeping peacefully beside me - but I dread the tomorrows! I'm the sole career and it is becoming too much - 7 years now with the last 2 years particularly bad. Oh I wish it would all just go away somehow. Some days I just wish one of us would die and mostly I don't really care which!! No way to live! So I need to bite the bullet. Hope the care home goes well for you. Take care. Mufti

Hi Mufti I can sympathise will all your feelings and understand the awful thoughts you are experiencing. Having now made my decision I am looking forward to a time when I can enjoy visiting my Mum & sharing quality time with her without enduring all the demands of being a sole carer. It is a completely exhausting process and will always have a limit particular to each of us. I am fast approaching the point at which I would probably become resentful of the effects that the demanding role of sole 24hr carer was having on me my health & my quality of life. Having made my decision I feel much more optimistic about both mine & my Mother's future. I know it won't be all roses but I feel lighter knowing the burden can at last be shared, leaving us both space for enjoying our time together. I think because the process has been swift for me that it has helped me move my response to this situation along quicker. Yes there were many tears rooted in an array of emotions: guilt, relief, shock, grief and more, but now I feel for the first time in a long time that I actually have a future. Be gentle with yourself you have done a wonderful job for the last 7 years, you like me are about to move into a different phase of caring both for your partner & yourself. Good luck

 

[Merrymaid]

Hello again. Mum's move into the CH has been delayed a bit by the Social Worker being on holiday. So I have spent the last couple of weeks going over my decision again & again. Needless to say I have not been getting a whole lot of sleep during this time. I have managed to tell my siblings which is one hurdle less. I have also been looking at Mum with new eyes, checking my decision against her daily behaviours, I know not the wisest thing to do. But just at the point where I begin to doubt myself, the negatives that brought me to this decision re-surface & I know I have made the right choice. Although I have cared with Mum from the outset & she has been ill for many years, I only started to keep a journal in March this year when the AD began to pick up the pace. I am so glad I did, initially I felt the benefit of venting my day to day frustrations, but now looking back I also have a record of her behaviours and symptoms over the past few months. I am currently typing this up (minus my emotional responses!) for the staff to have an understanding of where she is at when she moves in to the CH. The SW will be calling on Thursday together with the CH Manager, while Mum is in the day centre. I still have a huge knot in my stomach at the thought of her going, but I know she will be well looked after & I am lucky to find somewhere so close. Apologies just getting a bit jittery as the day draws near