Dilemma - moving to a care home

[cjc35]

Hello
I am a new member to this site and am really hoping that someone out there might have some advice. For some time my whole family have been in a permanent state of worry and concern.
The dilemma is as follows.

My mother was diagnosed with a mix of Alzheimers and vascular dementia a few years ago. Until about a year ago she was managing to live at home with the support of my father and other family members. However, my father is quite frail himself as he has Parkinsons and has deteriorated quite rapidly over the last few years. My brother and I therefore helped them to move to a kind of semi-supported but independendent flat in October last year (2007). Very sadly, my mother interpreted the move as a complete betrayal by the people she loved. For many months she told everyone how her daughter(me!)had pushed her down the stairs and put her in a car and taken her to this awful place that she says (virtually every day) that she hates. One year on and with low blood pressure causing a fall and a traumatic spell in hospital she has shown further decline. She is now having problems dressing and washing and is not really able to take in information or articulate very clearly either her thoughts or feelings. However, based on observation, she seems increasingly fearful and suspicious. When I tried to coax her into having a bath at my brother's place this weekend she became absolutely distraught saying she didn't know where she was or where I was taking her and implying she didn't trust me. She was in tears for quite a while (as was I...).

My brother and other family members have reached the point where we think she needs to move to a more supported Alzheimer's care home as in most ways she is no longer able to function in the normal world and therefore it seems cruel to keep her here. My Dad is very reluctant to give up caring for her but is beginning to accept the argument that maybe she needs to be with people like herself, that she will be able to relate to them more easily and they will provide the right level of stimulus.

At the moment we have been told that she is under constant pressure from trying to understand and operate in what to her is now a very confusing and disorienting environment. But we are also really worried that by moving her we will destroy the already fragile trust she has in us. We are particularly worried that she might see her husband, daughter and son, who she loves very much and is very attached to, as rejecting her and putting her into another awful place. We couldn't bear it if the move emotionally scars her so that that is the predominant emotion in her final years.

We are also worried that the move will trigger further decline and she may completely disconnect from us. On the other hand we have been advised by professionals that she will settle after a few days and that this is now the right environment. But will she? Or will she just go into a catatonic state out of despair and sadness?
Does anyone have an experience of what a move does to people with Alzheimer's - particularly on an emotional level - and how it affects their relationship with family. We would be so grateful for any advice.
BW
Caroline

 

[jenniferpa]

Caroline, I have moved your thread to the main support forum so that more people will see it.

 

[sue38]

Hi Caroline

I'm sorry I can't give you definite answers to your questions. Your mum may settle very quickly in a care home, she may not, nobody knows until you make the move, and even then it may be some weeks or months until she settles.

I can only tell you what has happened in our case.

My dad moved into a Care Home at the end of October and we too were told he was likely to settle quickly as he was compliant in the assessment unit. This hasn't been the case.

Has my dad deteriorated since going in the home? Yes, but he was already beginning to decline quite rapidly at home. Does he hate us for moving him to the care home? Surprsingly not, although we're not sure how much he realises of where he is.

Do we regret moving him? No, we couldn't have carried on as we were. My mum, his main carer, has health problems and just couldn't manage him.

Go and look at as many homes as possible. Have you been told what your mum's care needs are? Does she need a dementia home and does she need nursing care?

A good place to start to look is the CSCI website

http://www.csci.org.uk/ but don't rely too heavily on the reports.

And welcome to TP.

 

[BeckyJan]

Hello Caroline:

I do understand how difficult this is for you and your family.

Not sure if I can help but should explain that my husband went into CH a few days ago. I could not cope with his 24 hr mobility problems and mental deterioration

He is very depressed and unhappy at the moment but all concerned, even his fellow colleagues there, all assure me that he WILL settle. I also am worried about deterioration, but if honest I know he has deteriorated over the past year even with my TLC. Inevitably it will happen anyway.

Have you any help at all from local Mental Health team, GP, or Social Services? You should! I would guess that the next move should be to an Assessment Unit where the team will discuss with family what the next move should be.

I doubt very much that in the long term your Mother will 'hate' you - once adjusted to a new situation.

It is hard - but hopefully here on TP you can share this dilemna with others who have similar experiences.

Good luck Jan

 

[jenniferpa]

Caroline - there were a couple of points in your post that jumped out at me.

You say you feel she needs to be in a more supported environment, and I'm not disagreeing with you, but you should be aware that while there are some bad homes and some great homes, most of them fall into the average category and even in the great homes, you may not find a great deal in interaction between AD sufferers. One of the "side-effects" of the new mantra "keep them at home as long as possible" is that by the time people get to these homes they are often way past social interaction particularly with more than one person. So while many people find organized activities are very helpful (although they are often few and far between) others might find such activities way too stressful. I don't think "that she will be able to relate to them more easily and they will provide the right level of stimulus" is necessarily true about other sufferers although one can expect it from carers (although it doesn't always occur)

Deterioration - a lot of people do report that people deteriorate when they enter a care home environment, but I do think this is partly due to the removal from familiar surroundings. In their own homes the confusion that does exists might not be so obvious as it is when they are put somewhere new.

As to how she will react - no one can tell you I'm afraid - even past experiences are meaningless. I think anyone who tells you she will "settle within a few days" is overly optimistic, but you might be lucky.

In the final analysis, if your father can no longer continue to care for her at home, he can no longer continue to care for her at home. I understand the desire to try and anticipate what will happen, but when it comes to AD it's really not possible in part because do do that requires some sort of logical sequence (do A then B happens) and logic and AD are not happy bedfellows.

 

[JPG1]

I would like to say only that I agree with Jennifer's last post.

There are no guarantees - every single person with dementia is different from any other.

Every single care home is different from any other.

If those stimulating activities are provided early in the dementia, then they are most useful. The later they come, then the less useful they may be.

Many so-called activities are fairly stressful, and that may depend on the nature of those activities and the 'kind of person' involved. Some people take easily to singing/dancing/reading aloud/performing in public; others may not. Some people take easily to painting flowers on a sheet of paper; others may not.

Some people adapt easily and gently and without problems to care-home living; others may not. Just as some of us like holidays in hotels; others prefer cottages/villas/caravans.

Think of your Dad, as you think of your Mum. Then think about all the family involved.

.

 

[CraigC]

Hi Caroline,

I think Jennifer and others have explained everything so well. Many of us on the forum have been through this horrible dilemma and I'm sure many would agree that finding the right home is not easy. As Jennifer says, look at as many homes as possible and if at all possible go with someone else to get a good mixed view.

There are some homes you will want to turn round and walk straight out, but don't just go on visuals a good home has the right ethos and the staff are key (in my opinion). When I was looking for a home for dad, the best advice someone gave me was to make sure that I looked for a home that suited dad and not just me. Mum and dad have both been in VERY different homes, but they both suited them as individuals (they had unrelated illnesses by the way).

I totally agree with Jennifer when it comes to people leaving it until the last minute to find care and often too late. Care managers have often said this to me 'if only people had come to us a few months earlier' or even years in some cases.

Will the move trigger a further decline? That is so difficult to answer, but you need to weigh up the other dangers and risks of someone living on their own with dementia or being cared for people who have their own health problems - sometimes it takes people outside to make carers aware of that risk. I disagree that it may just take days for adjustment and I think being realistic you will need to give it time. The first few weeks are difficult and time is needed to adjust. Some people on the forum were advised to keep their distance when someone first moves into care and other told to keep a lot more contact and TLC. Again, it is down to individuals and how you think they will react.

The real key is finding the right home and I'm afraid you will need to kiss a few frogs - care facilities in the UK are quite a mixed bag.

On a positive note, my dad is in now in a wonderful home and cared for and loved by so many staff. It is a second home to me too and full of some very special people. Mum was also in a very loving home and they cared for mum with respect and love right up until the end of her life.

Good luck and keep asking questions.
Kindest Regards
Craig

 

[Margarita]

We are particularly worried that she might see her husband, daughter and son, who she loves very much and is very attached to, as rejecting her and putting her into another awful place. We couldn't bear it if the move emotionally scars her so that that is the predominant emotion in her final years.

I can relate to that as that is now my mother would feel emotional.
My mother has AZ, VD. is in a later stage go to day centre 5 days a weeks , so gets a lots of simulation of interacting with people with a dementia.
When my mother goes into respite care home , they do not do so many activities as my mother does from day centre. So my mother does come back looking like she declined a bit in her walking interacting, but a few days later of day centre mum back to her normal self .

My Dad is very reluctant to give up caring for her but is beginning to accept the argument that maybe she needs to be with people like herself, t

Have you tried your local AZ day center,to find out how your mother would interact with people like herself

Just a thought as I am wondering if trying the AZ day centre would give you a clue in how your mother would feel like being left alone with a group of people with a dementia, but is pick up taken home at the end of the day
Or has your mother tried day centre before?

I must say my mother hated being left alone at day centre with out me around , but she learn to trust me that I was picking her up also my mother learn to trust me that I would also pick her up after a week or 2 at respite care home .

But then I got my mother use to all that 2 years ago, when my mother was at the stage she was not washing herself, would not let me help her wash or anyone else .

 

[johne]

Caroline,
My Dad has just agreed to move into a care home - though now he's worried about what will happen (quite naturally). Everyone (carers etc) thinks it is a good idea and he'll be much safer and have people to help him dress, point him in the right direction; as others have said it would have been much easier for him to adjust if he had agreed to the move a year or more ago - but that's the way it goes.
It would have helped to get some sort of professional advice to move into a home so then I could have said for example ' the doctor thinks you should move now while it's still easier for you to adjust to new surroundings'. Perhaps this is passing the buck, but people expect different things from family and external professionals, so it could be a way of maintaining the trust between your Mum and you. As I have found though, it is difficult to strike a balance between progressing things with the necessary degree of urgency and not appearing to rush your parent into a change.

 

[Margaret W]

Sorry Caroline, can't really help. Just to say it took my mum a whole year to settle in her care home, and by then she was really well settled and I wouldn't have had her anywhere else. It was home to her by then. But it did take a year.

People suggest a few week or months, but in mum's case it was much longer. Many times I thought of moving her, but I am glad I didn't.

There were lots of prolems with the care home, I thought it would be perfect, but at the end of the day nothing really mattered only that the staff were kind and loving.

Love

Margaret