Are we doing the right thing?

[huntsu1]

I am so confused, I posted at the beginning of the week, we have found a fantastic though very expensive home for my lovely MIL, I know we should not mention names but the home has a floor especially for dementia suffers called 'Reminiscence', we would not ask for anywhere better and although it will probably take all of her saving and her home, it is after all her money.

We were forced into a situation over the Christmas period with her carers, this is the second company we have used and although two of the carers from the present company have been good the rest leave a lot to be desired, we cannot now believe what is written in the book as it appears to be the work of fiction.

MIL lives alone with a care package of 3 visits for 1/2 hour each day, (this was what was assessed as her needs by SS) she is self funded although we get a slightly reduced rate for those hours, on top of that we pay for an extra 30 minutes in the morning as she does not get up until the carers arrive and 30 minutes is not long enough to get her washed and dressed and supervise her breakfast, without this she would not wash or change her clothes and throws her food in the bin (o or worse still puts it outside which attracts rates and foxes etc). We also pay for an extra hour twice a week just for company as she is so lonely.

Last week she asked who the man was that went into her garage, she has the key and it is kept locked, we have also had loads of trouble with gas/electric, they keep asking her to change and she agrees, as fast as I was sorting it out she would change it again,

The four of us visit regularly, myself and SIL visit every day at different times, my husband most days as he works shifts and BIL at the weekend as he commutes, so she is not short of company.

Up until the last week she has been very miserable with both myself and SIL, although her mood changes when anyone else is around. We endure nightly phone calls sometimes as many as 8 or 9 asking us what she should be doing, how she cannot go on etc.

My husband and his brother registered the EPA (jointly) back in September which is now in-place, we know that MIL is not going to be happy being moved from her home where she has lived for 40 years (see my first post) question is can we insist she stays at the home even against her will, she never goes out unless forced so would no leave under her own steam.

Last week we were so sure we were doing the right thing, she will get lots of attention if she wants it at the home, we will be able to visit her every day without having to do her shopping, washing ironing, we will be able to give her quality time. She no longer says 'here's my Sue' when I come in but refers to me as 'dear' (like the carers) I knew this would happen when she no longer recognised family but its the fact she no longer seems as miserable, she now seems to be hiding her true feelings as she knows it is these that have convinced us she cannot live alone any more.

Sorry for such a long rant but my BIL and SIL are convinced it is the only option, and although I know it will come eventually I suppose I am scared about next Wednesday, it seems so cruel to take her from the home she loves against her wishes.

 

[noelphobic]

I think you are not only doing the right thing, you are doing the only possible thing. Your mother in law is obviously vulnerable and needs more and better care than is currently being provided. I think you know this but it is very hard to have to go through this and self doubt is absolutely normal.

My mum went into residential care soon after my dad's very sudden death. This was obviously a stressful time anyway, and the council run home she went to for respite care, where we would have liked her to have made a permanent move to, was under threat of closure (and did subsequently close). We had a choice of two homes and very little time to make the decision. From what you say, the home you have found is as good as it gets, and will provide the best possible care for your mother in law. That doesn't mean that it will be a smooth transition. A move is stressful for anyone, let alone someone who has dementia. However, there is no way of knowing how your MIL will cope until it happens. All you can do is prepare her as best you can and be prepared for the worst case scenario of a difficult time of adjustment. That may not happen and your MIL may take very well to the new home.

There will always be someone here to offer advice or a 'listening' ear should it be necessary.

 

[Zadok]

Going into a home

Oh how I feel for you!
I had to make the same decision last March. Today I had a bit of a lump in my throat as I locked up the bungalow for the last time as the sale of her old house completed today.
However.I have no regrets at all. I did try to choose carefully, as you have done, and logically there was no other choice to make. Your story is SO familiar. The carers in our case were fine, but never allowed long enough by their agency! I visited, but never at the time when she'd done something silly or dangerous. The night phone calls, everything has a similar pattern.
Mum settled slowly. I took her there as if it was a day centre visit, quiete matter of factly. Not particularly saying she was leaving her home, just trying thsi place for " a while".
Now she is less agitated. Most times she knows me, sometimes she's even pleased to see me. She still talks about going home......but it is back to her mum and dad's becasue her dad will be cross if she's out late. She is much calmer. I'm sitting with her not dashing about rummaging under cushions looking for hidden food,money, dirty clothes, not checking on medication or carers etc.
Hope this helps. You are doing the right thing.

 

[Michael E]

It is dreadfully difficult to give advice particularly when it is about taking over somebodies life and forcing them to do something they almost certainly are going to resist. I can only offer my experience of putting my wife into a specialist care home beside the sea with sand dunes, 2 specialised full time activities persons, a full time psychologist and an extremely caring staff looking after 53 people with Alzheimer's.. I am pretty certain this home is as good as it gets...... But

My wife required 24/7 attention. Presented the full AD range symptoms of anger, wanting to go home (the imaginary place where her parents are/were. Very difficult to make eat and various scatological problems... It was in the end not me but her Doctor and the home sociologist who told me that I should find a place in a care home whilst she was still capable of assimilating herself into the situation.... I lied to her and told her it was a hospital where she was going to be examined for her stomach disorders etc etc... She accepted the lies and moved into her own room in the home which I had furnished with some of our furniture, pictures and ornaments and it was sort of OK...

Be aware that sort of OK does not mean it is actually the ideal situation.... People with AD frequently want to be anywhere except where they are at the moment... when that stage happens then I think the move is easier for us - the people looking after them. If they are not in that stage then I think the move into the home and the fact the exit doors are all locked is deeply traumatic for the patient. I am not saying it is wrong just that the price of imprisoning somebody where they do not want to be is quite high if they are still capable of operating a bit independently....

Of the 53 patients in Monique's AD home in conditions varying from a bit confused to almost dead about a quarter are constantly walking the corridors or out into the garden trying to escape... Monique included... another half are 'institutionalised' and accept the situation and the remainder are in such a mess they are just out of it....

I think perhaps too many visits can be counter productive... It is important that the person accepts that the home is their new home and that they come to accept the other inmates as their friends and companions and join in the home activities. They need to relate to the staff in the same way as they related to us or the paid carers that came into their real home... One way to achieve this is to not visit too often at first and then try to visit an appropriate amount of time for their well being.. The visits are a salve to our consciences as well I think.

Please accept that I am not actually commenting on if moving your MIL into the home is a right or wrong decision - I think the input of somebody like her doctor or a sociologist experienced in Alzheimer's may help... If I had not had their advice Monique would have been out of the home she is now in one week after admittance... I think it may well have been as bad for me as it was for her... It will be the same for you as your MIL begs and pleads to be allowed home every time you visit.. that is the almost worst case scenario - almost.

Horrible decision to make

good luck with it

Michael

 

[Skye]

Hi Sue

I agree, it's a horrible decision to make, but I do think it's the right one. Your MIL is vulnerable and lonely, and it makes sense to have her in a place where she will be cared for. The home you have found sounds lovely.

Michael paints a very black picture, based on his own experiences. But it need not be like that.

Monique is your wife, Michael, and was used to being with you virtually 24/7. Of course it was going to be traumatic to be separated from you. Sue's MIL is living alone with visits from carers and family. Having constant care and company may make her happier, once she has accepted the move.

I'm also going to disagree on the subject of visiting. I know there are two schools of thought on this, but I subscribe to the 'visit as often as possible/practical' school.

Since John was admitted to hospital, then to a CH, I've visited every day, and often twice a day. At present, I go in every lunch and tea time to feed him. I agree that this is partly for my benefit, I feel that I am in some measure still caring for him. But I'm sure it makes him feel secure, in that I'm also part of his new environment, and the staff agree.

So Sue, there's no right or wrong in this. I'd suggest going in every day for a few days, and talking to the staff about whether they think your visits are helping or hindering. They'll know by how she is after you leave.

Good luck with the move, I hope you don't have too many problems. Let us know how it goes.

Love,

 

[huntsu1]

Thanks You

Thank you all for your kind words, I cannot imagine how it must feel if it is your partner that suffers from this terrible disease. My Father died when only 47 in a work accident, my Mother and FIL both had cancer, Mum died peacefully in a hospice, and FIL at home with his family (we cared for him at home throughout) All of these were hard to deal with in their own way but never as hard as watching someone you love being overtaken by dementia.

I think we have known all along we are doing the right thing, but needed confirmation. The thought of Mum having a fall (she is quite unsteady and wont use a stick) and being admitted into hospital (last time was when she had her 2nd son) would be devastating, I have seen 1st hand what happens to the elderly, confused when they need operations (spent 4 weeks myself in hospital having a hip replacement aged 37).

so, she has the money and deserves the best she can afford, we will take her on Wednesday, not making a big fuss, we will get her room ready with the things she sees daily. I am going to ring the home in a minute to check out some finer details, cannot remember if the room has curtains and what bedding is required etc and I am going to ask there advice on visiting etc.

Doing the practical things is easy, its the emotional stuff that hurts.

Once again thank you all, I have never used a forum before, but I find I have no-one to talk things through with, my Hubby is struggling with what he knows is the right decision so cannot burden him with my feelings also.

 

[Tender Face]

Doing the practical things is easy, its the emotional stuff that hurts.

I cannot imagine any 'TPer' reading that and not nodding their head ... and perhaps many like me with a wry smile and the glint of a tear ...... you've about summed it all up there!

Sue, I only 'come at this' with my own mum in her lovely little home of 40 years - knowing she is resolute that she will not leave it .... and me being resolute that if and when the time comes (I'm hoping we are still a long, long way off) ..... that whenever 'care packages' and whatever support I can muster fail to meet her needs ... I will do the right thing and insist ...... All very easy when it's theoretical .... I dread to think what state I will be in when that day ever comes ......

Who is to say what is right or wrong? There may on the surface be a logical decision ...... but logic is a rare commodity when the situation is emotionally charged ...... we can only go with what is in our hearts and our conscience and hope it's guided by logic. You and your husband sound like you know that - even if it is breaking your hearts - you are doing what you believe to be the best for her ...... who could ask for anything more?

Hope Wednesday goes smoothly - please let us know ......

Love, Karen,x

 

[Nell]

I think you are not only doing the right thing, you are doing the only possible thing. Your mother in law is obviously vulnerable and needs more and better care than is currently being provided. I think you know this but it is very hard to have to go through this and self doubt is absolutely normal.

Noelphobic has expressed this perfectly, in my opinion.

This is a terribly difficult time for you and your family. I'm glad you and your husband have a BIL and SIL to help you with it. This is definitely a time for families to support each other.

Can I just say, (as someone whose Mum has ben in a home for more than 2 and 1/2 years) that I think you will find it is the best solution all round? However, there will still be a great deal your MIL will need done for her - regular family visits, special shopping or washing, clothes buying, help with medical specialist visits, provision of special treats etc. etc. etc. She will still need you all, and it is only the physical caring and much of the worrying that is relieved.

Hopefully your husband and all of you can find comfort in knowing that your relationship with her will still be essential and important. It is just that (hopefully) you will find it easier, knowing she is safe and well cared for.

Wishing you all the best for a tranquil and uneventful move.

 

[huntsu1]

Just to catch up, Mum went into her new 'home' on Wednesday, all went as planned, SIL picked her up and took her back to their home while we packed her things and prepared her room, I had forgotton how lovely the room was and as luck would have it it did not rain, was a lovely clear bright day, we were able to make her room a miniture of her home, all her favourit furniture and pictures etc.

It had already been decided that it would be too stressful for all four of us to be there as she was going to be told she was coming for a holiday, so hubby and I left once she was on her way about 3:30.

The home phoned late in the afternoon and again early evening to reassure me she was OK, but still didnt help me sleep! 6 hours sleep over 48hrs just makes everything harder to deal with, any way, it was decided with the home that I should go in the next day at my usually time 4:00 to visit, I think this was a much for me as it was for her, I have seen her every day for the past two years.

I was so scared sitting in my car outside, I knew I had to be strong but with so little sleep - need I say more sleep deprivation is so common to all carers. Couldnt remember the keypad nunmber to allow me entrace onto the reminicene? floor so had to wait until I was noticed but could see Mum through the curtains sitting at a table with a carer and another resident playing pairs.

She was so much better than I expected, so glad to see me although thought I had come to take her home, a reply to my earlier post (sorry not sure who)suggested we should always 'do what was good and not what was right' I have quoted this to myself so many times over the last week - thank you

It was hard and I had to ask for help from her carer when she wanted to know when she would be going home, but kept reassuring her of all the good things, after an hour it was supper and as she was going in with her assigned carer I slipped away, She probably wont have rembered I was there as her attention span is very limited.

I shall be going in again this afternoon after work and know it will take time but feel really reassured by the staff who are soo good that given time she will settle, until then I will do what is good, avoiding the going home question.

I can for the first time in ages say that I am no longer worried for her Safety, its like a weight has been lifted. shes safe, warm, well fed and cared for, we will still see her on a regular basis but our time will be with her and not with shopping cleaning laundry etc.

Thank you all, sorry for such a long post, its very selfish but I feel much better for being able to 'talk' about it.

 

[Grannie G]

.

I can for the first time in ages say that I am no longer worried for her Safety, its like a weight has been lifted. .

This is one of the main reasons for considering residential care and everyone who has been through this will understand just how heavy that weight was.

I`m so pleased for you, that it`s all turned out so well. I know how much you agonized over it.

Love xx

 

[Skye]

Not selfish at all! It's helpful to read of others' experiences, and what worked.

I'm glad it all went so well, and your mum has settled reasonable well. It sounds as if she is being cared for, and it will be so much better for you to have that worry removed.

Love,

 

[jenniferpa]

Oh ditto about the weight - when you've spent your days (and nights) worrying about what might/could/has happened having that weight removed is a tremendous relief.

 

[Taffy]

I am so pleased that the move went so well, it does sound like a very caring home and I hope that it is all smooth sailing from here on out. Good Luck, Taffy.