Friends or family? Decisions

[Adrian M]

Hello,

I am new to this forum but have been following threads for sometime now. I don't know if I really qualify as a carer as I feel so inadequate compared to all the regulars on the forum, who have devoted themselves to caring for loved ones with AD.

It all started for me last year. My Mum, who has always been very independent (and I guess brought up me and my brother and sister to be the same) had begun to be a bit forgetful (missed my birthday that sort of thing) and some of her friends contacted me saying they were a little concerned about her.

For the past twenty plus years Mum has lived on her own, had a full life of activity with friends, charities and church. Both my brother and sister are abroad and I live a couple of hours away. I used to see her maybe three or four times a year - she would come to stay with us for a weekend (I have a wife and young family).

I went to visit Mum and met with some of her friends who with genuine concern felt that Mum perhaps wasn't really up to living in a such big house (our family home since I was a child) on her own. She was still driving and quite active, but sure seemed to be not as 'with it' as usual.

We all sat down with Mum and talked about what to do. Mum thought it might be a good idea (as did her friends) to move into sheltered housing - having a flat, other flats and other retired people around. We found somewhere, I arranged the move, the sale of her house. In the couple of weeks before the move there had been some warning signs - being a bit muddled about the move - forgetting about where she was moving to etc. She had seen her GP, he had ruled out most medical causes and had referred her to a local specialist. The diagnosis was 'mild memory impairment'. We went ahead with the move.

Within days it became clear that all was not going well - Mum seemed disorientated, more than we had expected.

Two weeks later I had the call from her local hospital - Mum had been found distressed walking in streets near her new home and had been taken by a kind stranger to the local police. She had also 'lost' her car it was not at the flat.

Much happened so quickly - her GP decided it was time to stop driving - this had a devastating impact on Mum's life. I was put in touch with the Intermediate care team from the local social services who were just great. Support from carers was put in place - initially for a few weeks from social services and then I employed a local care provider. It was just half an hour a day to start with, but that seemed to be enough to sort things out.

Mum still went out to many of her activities and her friends have been great visiting her and taking her out. That was last summer.

But that was just the beginning. Mum's condition has deteriated at a frightening rate - ( I have read many of the posts in on the forum written in terms of years what has seemed to happen to Mum in a matter of weeks / months).

Very quickly Mum became anxious and distressed - she could not understand why she couldn't remember things. Tearful outbusts followed, she was so muddled, just inconsolable. Soon she was not coping with some of her day to day needs, so I increased the support she was getting from the care team - first she couldn't cope with shopping on her own, then not eating properly (forgetting to eat/cook), but all the time the distress increased and she has become more muddled.

I have been very lucky with a great care team and lots of support from the local CPNs and specialist consultants.

The time has come however that all this support is not enough, Mum needs and wants the reassurance of someone there to support her all the time. She find it hard to be on her own, and the distress and anxiety has continued to grow so that today it is nearly always just below the surface. Other care issues are beginning to surface too with minor incontinence starting to be a problem.

I have discussed all this with Mum, her care team and the medical team and we are all agreed (inc Mum) that it is best for Mum to look for a residential care home that can provide the support she now needs.

Mum now has a diagnosis of Moderate Alzheimers dementia, and is being treated with Aricept (but with no discernable effect) and a cocktail of other drugs to try and help with her distress at her condition. This week she has been assessed by social services and they have recommended the need for a home registered for dementia care.

Now comes my dilema, do I look for a home near her home town where her friends will still be able to visit and support her, or do I move her to a home near me where I could at least be more in touch with her and her care.

I have tried to help Mum as much as I can over the last year, but I have failed to do much. I have been in constant touch with the carers and handle all her 'business' affairs (I have an EPA) but only manage to visit about once a month (and honestly even that has been difficult). I have a stretching job and family commitments - luckly a very supportive wife - but time is at such a premium I feel ashamed that I have let Mum down.

Mum has many good friends who will visit her and support her if she remains near home; they want her to stay. If I move her to be near me she will lose that friendship and support - but I would be able to see her more regularly than I do now and build a proper relationship with the care home. I have to be realistic though, I would probably not be able to give anything like the time her friends do now.

I just don't know if there is anyone on the forum who has been faced with a decision like this - The outcome has to be right for Mum - I just don't know what the future holds. I just don't know how long Mum will go on being able to recognise her family and friends; so much has already gone - she no longer remembers my father (they were married 35 years before he died in 1984) - her house, her career as a teacher, many of her friends.....

Thanks for listening, it has taken me nearly three weeks to write this, I am thinking about what to do constantly, I just don't want to let Mum down....

Adrian.

 

[sue38]

Hi Adrian and welcome to TP.

Your post was so moving and what a lot you have to deal with.

It sounds like your Mum has some really good friends. From reading other people's posts I gather that a lot of friends drift off when someone has dementia, but it sounds like your mum's friends are made of sterner stuff.

I understand your dilemma of wanting to have your mum close to you but recognising that with your other commitments you will not be able to be with her as often as you would like. But maybe the stimulus she would get from a variety of friends visiting her would be beneficial.

What do your brother and sister think?

I'm sure you'll get lots of help here to help you come to the right decision.

Sue xx

 

[DickG]

Hi Adrian

Welcome. Firstly the rate of progress of Alzheimers varies enormously so you should not be surprised at any rate of deterioration- disappointed certainly.

From your description of your mother's friends they seem to be a loyal bunch and it would be a pity to deprve her of their company and if she moved near to you would you be able to visit her as often as her friends? Do not feel guilty that you are unable to spend as much time with her as you think you should, this guilt is common amongst carers and without her friends would she be better off?

Nobody can make the decision for you but in your deliberations do not forget that you have a family and other commitments so give them due weight.

Good luck

Dick

 

[Skye]

Hi Adrian

Welcome to TP. I'm sure you'll find lots of support here.

This question has cropped up before, and I suppose it's an inevitable one when family have to take responsibility for a parent with AD.

The general opinion seems to be to go and inspect as many care homes as possible, and choose the one you feel most comfortable with, whether it's near your mum's friends or nearer you.

The main concern is that you have to feel that your mum will be well cared for when you're not with her, and you obviously can't be with her 24/7.

At the moment it seems logical to place your mum near her home so that friends can visit her. But if she continues to deteriorate as quickly as she is at present, it may not be long before her old friends mean nothing to her.

It's a hard one. I'm sure you'll get lots of advice, but in the end it really is your decision.

Keep posting, and let us know how you get on.

 

[jenniferpa]

Dear Adrian, first of all welcome to TP.

When the time came for me to move my mother, first to an extra care sheltered facility and then to a nursing home I tried very hard to find somewhere close to her existing friends, but unfortunately it wasn't possible. I live abroad so having her near me wasn't an option. Now in her case, she really only had 2 remaining close friends (part of the perils of living until you're 89). Even though I moved her 2 hours away from her previous home, one friend still keeps in touch, while the other one, sadly has had several strokes, been diagnosed with parkinsons and is herself now in a residential facility. What I'm trying to say is: now matter how one tries to cover all the bases, sometimes things get in the way. On the whole, if your mother still has friends who will visit, closer to them might be best. However, be aware that lots of friends will "drop off" as the dementia progresses, no matter how well intentioned they are now.

I think even if you're a long way away you can still build a decent relationship with the home - I have and I've done it from 3500 miles away. Also, bear in mind that this doesn't have to be a final decision: many people end up moving their loved one for one reason or another. Yes, it can be disruptive, but sometimes there isn't a choice. Sometimes it works out well, sometimes not, but as your mother's needs change you may find that she needs a different living situation.

In your situation, I would have a look at some homes both in her local area and close to you: you may find one stands out as being most suitable, and then in effect, the decision is made for you. More likely you will find more than one. Assuming that having checked up on them with CSCI (http://www.csci.org.uk/) they have no drawbacks, then you'll just have to go with your gut reaction. I know that sounds a cop out, but as I said, there are pluses and minus on both side, and the decision doesn't have to be set in stone.

Best wishes
Jennifer

 

[Áine]

Hi Adrian, and welcome to TP. I really feel for you with this decision. My dad was also one of those people who deteriorated as much in weeks as some other people do in several years. It's hard because no sooner have you sorted one care solution, than another is required. My experience (and I'm sensing yours too) was one of feeling inadequate because I was always one step behind what he needed.

There's no easy answer to your dilemma ......... obviously ......... or you'd have sorted it by now. A few thoughts though:

it sounds as though the services where your mum lives are pretty good - that counts for a lot.

is it worth visiting some homes both near where your mum is now, and near where you live and seeing if anywhere presents itself as "the right" place?

friends and staying local count for a lot ....... then again, how long might mum be able to appreciate them?

i'm not sure whether to say this, and it may not be true in your mum's case, but whatever you decide, mum might not be there for long if she's deteriorating so quickly. my dad went from more or less coping with once a day home care, to permanent care to the end of his life in the space of just over 6 months.

remember that whatever you decide it can only be the best decision based on the available information at the time ....... there is no right or wrong decision .....

 

[janetruth]

Hi Adrian

I am still quite new to all this myself, I had my mum come to live with us, but everyones situation is different. You sound like a caring son, who wants the best for his, once independant mum. No one can tell someone what to do for the best.
Your mum will now go through some changes, as you have already noticed, whatever you decide, will be a physical and emotional rollercoaster for you and your family.
It's times like this that we could do with a crystal ball, whatever you decide will be the right thing at the time, we have no control over the future.
Take care Bye for now
Janetruth x

 

[Grannie G]

Hi Adrian, welcome to TP.

I`m afraid I`m going to throw a spanner in the works.

However good friends are they cannot be expected to sustain the same level of loyalty as family.

However much your mother will miss them if she moves away, there will come a time when she may not know them.

Once she does not know them, they may stop visiting. I presume they are the same age group as your mother, so will also be going through the ageing process.

When she no longer knows you, you will still visit, because she is your mother.

Because she seems to have had a sudden deterioration, she will possibly be confused even now by a move. Ideally, you will want this move to be her last. You would not want to put her through the trauma of a second move, nearer to you, when the friends no longer visit.

If you are able to move her nearer to you, you will surely be able to visit more than you do now.

I`m sorry if I`m presuming too much. You. of course must feel free to make your own decision.

I hope the different opinions people have presented to you will help you make your very difficult decision.

Thank you for the clarity of your post. It was so easy to read.

 

[Margarita]

Sylvia However much your mother will miss them if she moves away, there will come a time when she may not know them.

I tend to go with as that is what my first thought was when you said

Mum has many good friends who will visit her and support her if she remains near home; they want her to stay.

And if they are real friends I am sure they would travel to see your mother in what ever home she is in, when they can. Your mother needs to be near you, so you and your family can visit when you can, you don’t need the added stress of worrying how far it is to get to see your mother when you say

where I could at least be more in touch with her and her care.

Whatever decision you make your no the right one, when you think from your heart. From your post it reads that you have given your mother the best support a mother could ask, want or need , so what ever decision you come to I am sure it be the right one for both of you

 

[Adrian M]

Thanks to everyone who has replied. I am quite overwhelmed by your kind words.

Everyone's advice is welcomed; I have much to think about in the next few days as my search for a suitable home for Mum gets underway in earnest.

I will keep in touch and let you all know as we move forward.

Adrian.

 

[DeborahBlythe]

Hello Adrian,
On balance, I think I would want my mum nearer me, for all the reasons others have outlined. At the end of the day, the friends cannot be relied upon to keep up the close links and you won't want the stress of having to gallop over to wherever and beyond when the going gets grim, as it sadly tends to do.
One thing I would add is that if you can find a residential home which also has a nursing secition attached to it, then that may save you having to make another major move at the point where your mum might need nursing care as opposed to simply residential. Some care providers are developing in this direction already. I know BUPA and Southern Cross have some homes like this, but please do not take this as a recommendation, just a point of information. I think there are others also.
Best wishes,Deborah

 

[Adrian M]

Decision made...

Thanks for everyone who read my story and offered kind advice.

Since my last post, I have with my wife looked at quite a few homes and settled on what seems a really nice (modern / well equiped and staffed) specialist care home for Mum just 10 minutes away from us - and they have a space

In the end it was the need to be more involved in Mum's care and some advice from Mum's consultant (she told me Mum was unlikely to be getting much from the occasional visits from friends and she was unable to recall any activities happening now) that tipped the balance toward moving her away from her brother and sister in law (who are not too well themselves but have supported Mum through everything) and her friends, who have kept up with visiting and involving her in the activities she has done for the 23 years since my father died.

I visited Mum yesterday and we talked about the plans - she was calm and I think releaved initially and quite rational about it all; but then the anxiety, tears and depression set in as she was not able to take everything in and retain it.

This just made it clear to me that the time really was right to take the step towards residential care.

Much as I am sure she loves her friends and does recognise them when she sees them, she doesn't remember them anymore and thinks she doesn't have any friends anymore...

Now the hard part starts, I just know it is going to be an emotional roller coaster over the next few weeks as we call come to terms with it. It has in the end all happend so quickly; I am to sign the contracts tomorrow and plan to move Mum in next week - spaces just don't wait till you're ready (but will I ever really be ready... its just so hard to come to terms what is happening to Mum...)

I just wonder if thats too quick, not much time for goodbyes; but now she knows the plan the daily anxiety - where am I going? why? have I seen it? I don't remember / I don't understand is all flooding out.

I just lost count how many times I went through the pictures of the care home and what it was like yesterday (every 5 minutes for hours... )

This journey with Mum is coming closer now, so I think I might just be visiting TP a bit more often..

Thanks for listening....

Adrian.

 

[fearful fiona]

Hello Adrian,

I have just read all the messages to you so know the decision is made and it sounds to be absolutely the right one. If your Mum is only 10 minutes away it will not be too difficult to pop in if anything crops up or if you just want to see her.

I am glad you signed up to TP and welcome! I will be faced I fear in the not too distant future with making the same difficult decision as you. I am pleased for you that your Mum went along with your decision. Unfortunately that won't be the case with my mother as she gets quite violent (verbal and physical) if any change to her routine is suggested.

I know when the time comes to think about moving my Mum to residential care, I will revisit this thread and read all the advice to you from other TP members, so thank you again for sharing your experience.

 

[Skye]

Hi Adrian

I'm glad you've managed to come to a decision. I think it's the right one, you'll feel much happier having your mum close by.

It is quick, but I think that's all to the good. You're going through all the repeated questions now, and if you'd had a month to prepare, you'd have had a month of the questions! I'm afraid it's a manifestation of anxiety in AD patients.

I do hope your mum settles quickly, some do, others take some time.

Let us know how you get on.

 

[Grannie G]

Dear Adrian,

I`m so pleased you were helped to make your decision by all the different points of view expressed on TP.

That you`ve been able to find a good local home is a bonus.

We all know how painful `Goodbyes` are, and `Long Goodbyes` are even worse.

So even though things may be moving quickly, it may be for the best. Short and sweet.

I really hope it all goes well and you let us have an update.

 

[Nell]

Really, we should try to "bottle" Sylvia's advice - it is always so good!

I agree that it is hard when you have to make the move suddenly, especially when you have only just reached the decision. We had to do the same for Mum and Dad when they moved into care - for the same reason. As you say Adrian, the vacancies do not last long!!

I totally agree with Sylvia however that it is probably for the best - it reduces the amount of time for the person moving to get agitated and fretful. It puts a HUGE strain on you, but once your Mum is settled, it will start to geteasier. (I promise!!)

Sending you best wishes for a very successful move - on all fronts!

 

[Margarita]

I just lost count how many times I went through the pictures of the care home and what it was like yesterday (every 5 minutes for hours... )

I only know from my own experience from when my mother go into respite , is not to give her to much information about the date she going or what it like , because like your mother she would be just like that

daily anxiety - where am I going? why? have I seen it? I don't remember / I don't understand is all flooding out.

So what I have learn so mum does not distress her self over , over angina , because she just can't retain the information , I organize it all without telling her anything

Tell her the night before , but if I am really being realistic with myself about the AZ I do it on the same day .

In the taxi I reassure her all OK , as she gets worried , then once she in the home she fine , all the worry is gone .

 

[Dee]

Hi Adrian

I know you have had a lot of replies to your post but I wanted to add my voice as your circumstances are almost identical to mine. My mothers condition worsened dramatically after she moved house 3.5 years ago and it became obvious after about 18 months that despite the support of a band of loyal and caring friends that she needed the reassurance of someone around all the time. The situation came to a head when her physical condition suddenly deteriorated and she became unable to care for herself.

I lived 2.5 hours away. After much discussion, soul searching and visiting homes I found one 10 mins away from me to where she moved nearly two years ago. She did have to have a respite bed elsewhere whilst a room became available but we were fortunate that this worked out.

Whilst it was a very distressing time for us all, she did settle and its a decision that I have come to realise was right for us. She still has contact with her friends by phone and even some come to visit occasionally but I realised that as they were getting older it was unfair to expect them to visit her. Also, there was the chance that if she outlived many of her friends that she would be isolated in a care home far from me.

Her physical condition improved as soon as she moved up here and was receiving the care she needed. Mentally, her decline has, of course, continued but I have been able to visit her nearly every day and she comes home for lunch most Sundays. She has forgotten so much of the wonderful independent life she led and its heartbreaking to see but I am reassured that I can see her often and that she is well cared for.

I know everyone is individual and I am sure that you have made the right decisions for you and your mother.

Kind regards

Dee

 

[mickyinlondon]

Hi Adrian.

I agree with Grannie's post.

Friends come and go; some families are not worth a light; but all things being equal; family is by far the best option, in my opinion.

But; Follow your heart, follow your instincts, and repay your mother for all she did, and gave to you; she deserves that at least; if not, the guilt will eat you away.

I do not mean anything by what I write; and its just my personal opinion.

Your mothers time is near; stand by her side; you as a son and a man; or you will fall by the wayside.

It is clear that you are a good loving son to your mother; I personally think you will guide yourself through it all, even if you personally have doubts at this time.

I wish you courage and strength; and I think you already have it...........Micky

 

[mike.sheehan@uk]

Friends or family? Decisions?

I know that you've already made your decision on this but I just wanted to give my thoughts on the subject. My situation is very like your own in that we moved my mother from her home to a maisonette near to me. Unfortunately it was all too late and she never settled in. She was very muddled and I'm sure would eventually have ended up wandering the streets if she had been there much longer like your mother. After 9 months my brother and I could see that things had gone too far and the final straw was when she 'welcomed' someone into her home who went off with the only valuables she had for next to nothing. She then kept wondering what had happened to them!

We have found a very nice 'home' in the same town as where my brother and I both live. We visit alternately so every day she has a visit from one of us. I agree with a previous message that at the end of the day they are OUR responsibility and you cannot really expect other people to do too much as they themselves are getting older and have potential health problems. I like having her close as I can pop in whenever it suits me so it's not a hardship or a nuisance if she had been in a home where she was living before. Personally Adrian I think you have made the right decision and I hope you will feel you have. Good Luck.