Relocation

[rog]

I'd be very grateful for any views on the pros and cons of relocation.

My elderly mother has middle stage AD. She lives with my father in London whereas my brother and I (and our families) live in the North, 4 hours away by car.

In London we have struggled to establish any satisfactory care and support for my mother and father due to our distance. My father is pretty much the sole carer. Problems of isolation, inadequate care and support exist as well as separate concerns regarding both my parents' health, even beyond the AD issue.

I believe we could offer my parents a great deal more support ourselves and marshal any outside care so much better if they lived close to us. On a practical level and on the level of providing direct emotional support relocation would reap huge benefits.

My father would be in favour of the move if it was in my mother's best interests. Clearly, he would benfit from lots more support. My mother prefers to defer any decision and, if anything and in truth, is probably anxious of the thought of any change.

Fortunately, financially the move would be very viable. The only but also fundamental issue is whether it would be in my mother's best interests.

A psychiatrist has now warned us that relocation may be detrimental as it will increase my mother's disorientation and therefore may accelerate her decline. At present she can still, more or less, find her way around her home of 30 odd years. Elsewhere she is far less sure of herself.

Socially, my mother has few contacts in London. It is however where she feels as home.

I had been aware that the loss of familiarity with the home and locality could be distressing. I hate the thought of my mother waking up every day and feeling lost and distressed in what would be intended to be her new home.

I feel there is are significant pros and cons with both options. The thought of my parents remaining somewhat isolated in London is very difficult, knowing how much better things could be on some levels were they to move local to us. On the other hand, it may be that the move would be counter-productive because of increased disorientation and loss of the sense of home.

I don't know what to do! I propose seeking some further professional advice. I would really welcome any views.

Thanks

Roger

 

[Jenny M]

Dear Roger,
In November 2003 we moved my Mum from the home that she had lived in for 45 years to a new home very near to us. At the time, we had no idea that she had dementia, we just thought that she was getting forgetful (she was 71 at this time). When ever we asked my Mum how she thought about the idea of moving she always said something like "I'll do whatever you want". I realise now that an inability to make decisions is a classic symptom of dementia.
Mum left behind many friends and neighbours, but on the plus side, she would see more of her 2 grandchildren (my children) and I and my husband would be nearby to help her to do her shopping, gardening etc. Within a few weeks I was blaming myself for having moved my Mum away from her home. She missed her friends and her home terribly. She couldn't work the new cooker, or anything in the new house. She didn't know anyone apart from me & my family & some of my friends, and she spent hours on the phone to her old friends and neighbours.
By last summer, I was getting seriously worried about her. She wasn't eating, unless she came to my house in the evenings (I work during the day). She then started to lose all sense of time, sleeping during the day and calling me for a chat at 1.30am. She also became convinced that other people were living in the house with her, and that members of the family had visited her when they hadn't. To cut a long story short, she went into hospital in September for a gynaecological procedure which should have kept her in hospital for 2 days maximum, and she never went home again. She was in hospital for 2 months until a residential place became available.
Do I regret moving my Mum? I did for a while, as I have no doubt that it accelerated her decline. On the other hand, she clearly had had dementia for a number of years and she would have declined eventually even if she had remained in her old house. I am relived that she was nearby when the decline happened, and that she is now near enough for me to visit her a couple of times each week.
I know that this won't make your dilemma any easier. Whatever you do will have pros and cons. Good Luck.
Jenny

 

[rog]

Thanks Jenny

It's really helpful to hear of your experience.

It sounds like your mum had a better social situation and was probably more capable of doing daily tasks such as cooking etc than is the case with my mum.

My mum would have the benefit of having my dad with her. I'd hope this would ease some of the sense of unfamiliarity. My fear is the difficulty of absorbing and retaining new experiences will obstruct my mum ever settling in to a new environment.

Anyway, lots to ponder.

I wish you all the best with your mum .

Regards

Roger

 

[chrisc]

Hello Roger

We have the exact same situation as you except we are in the south and parents are north and my dad has AD and mum is the carer.

We as a family are starting to wrestle with the idea of moving mum and dad south, in fact I spoke to mum about this only a week ago and was relieved to hear that she had already started to consider the idea but wants to wait until or if Dad gets worse. In other words she wants to cross the bridge when she gets to it!

I have already come to the conclusion that any move or major change is going to almost certainly have a negative impact on Dad, but in all honesty I have also reached the following rather brutal conclusion. It's not really about dad, it's about mum and about not leaving her on her own to spend her autumn years as a nurse to dad, it's also about the fact that we (the children) have lives and kids of our own and can't realistically support mum and dad long range in the way that we would ideally like to. The time will come for a move and there is no real debate about it, it's more a question of when not if. He has AD, he has bad days or suddenly get's worse for no obvious reason at all, sometimes he has good days or a good week for no obvious reason at all. This is despite the routine mum has for him and the familiar surroundings of their home and friends - there is no real pattern to the disease, at least in his case. Another factor is the friends that they have where they live are also getting on a bit or falling to bits in various ways, the proximity is good for mum but how much real value or support can they be for her on the bad days?

We can't change the AD, we can only try to make his life comfortable and fulfilling in every possible respect, I guess the number one priority is to give my mother a full and enjoyable life with her husband, children and grandchildren close by, in my opinion that's how things should be and within reason and at my mum's pace, that's the way it will be.

I'm also very sorry to say that there is a good chance that if your mother is otherwise fit and well and can 'go on' for a while yet, in my opinion there is a good chance she will eventually start waking up lost and distressed wherever she is. 30 years in the same house means nothing to AD, my parents have been together for over 50 years but my Dad still asks her who she is from time to time, given that he can be very 'with it' on a good day, this kind of thing is increasingly distressing for mum when it happens on a bad day.

I'd really like to labour the point that you must try and follow what your heart feels is best for the non AD parent.

A final thought is stating the obvious but sometimes we all need that done for us and it is this - most older people are notoriously bad at asking for help, if they start to say things like 'whatever you think is best' then that's almost certainly their way of saying, please make this decision for us.

The very best of wishes to you and yours. Chris

 

[rog]

Thanks Chris.

It does sound like our situations are very similar.

I agree that it's a question of when not whether.

It seems to me that generally the focus as to welfare tends to be on the AD sufferer rather than carer. I think you make a good point about looking at our parents as a couple and balancing both their interests.

I think my dad will be very concerned as to the professional advice we receive regarding the direct effects on my mum. It seems to oversimplify matters to say ( as I understand one psychiatrist has) that any move would increase confusion, speed decline in the AD sufferer and therefore should be ruled out.


It seems you share my impression that other external factors such the type and level of care and support given in the new location could balance out the negative impact on my mum beyond teh obvious positive relief of burden for my carer dad.

I've decided to meet with my mum's caring psychiatrist and go through the pros and cons for both my mum and dad. Hopefully this will give us a better balanced view upon which to make the decision.

I wonder whether you have considered the merits of a bungalow as opposed to other types of housing for your parents? Neither of my parents have any physical disabilities or incapacity yet. My fear is that AD may result in other health complications or that more than one level would be less confusing.

I'd be interested to know how you're looking at it.

Anyway, all the best to you and your family.

Regards

Roger