Truth hurts - better to lie??

[Adrian M]

I haven't been to the forum since taking the decision to move my Mum to a care home a couple of weeks ago. (you can read the thread 'Decisions').

Since making the chioce to bring Mum to a home nearer to us, I have been on what I can only describe as the most scary rollercoaster ever.

Before the move Mum seemed to approve of the plans, she seemed to know she was moving. OK she couldn't retain any of the details and kept asking to go over the details, I thought it was for the best.

She had never been happy in the sheltered flat she moved to last year - she never got used to it or recognised it as home. We had increased her care to three longer visits a day, but it wasn't enough. Mum was constantly anxious and distressed and every visit the care log showed tears, and distress.

The move days went OK - Mum helped name all her clothes and we didn't have distress as we started the journey to the new home.

The care home were great on arrival, Mum was off for lunch introduced to some other residents, the staff were all welcoming.

But very soon the tears were back together with the "where am I?" "what am I susposed to do?". I knew it would be difficult for Mum - her short term memory has really gone and she cannot recall where she is. All the staff and residents are unfamiliar. (But very supportive).

But by the next day the questions had changed "Why have you taken me away from my friends and my home?" "when am I going home?" - but not the flat she has just left but the family house and garden she left and sold over a year ago.

This was quite difficult to answer I have always be truthful with Mum about what was going on - but I found myself avoiding the questions.

But that was just the start. By the weekend the questioning had got more searching and the carers (this is a specialist home for AD type clients) were being pressed every few minutes with the same questions.

Next we were onto "Please call the police - you can't keep me here it is not a prison" This really distressed me - what would happen if Mum did exert her right to leave? What would happen - I just don't have a plan 'B'.

Now we have the hardest question of all - "why can't I just come and live with you. I could look after you! - I could look after your house and get you a meal when you come home from work"

I work really long hours (I am out of the house at work 13 -15 hours a day) not to mention I have a wife and three young children that need me too!

This has never been an option; Mum never wanted it - she lived with her mother, my father and my brother and sister before I was born and from what she said it was the biggest strain of her life - she didn't want that for us. I love my mother deeply but I have my own wife and young family to put first.

So now the dilemma - do I just tell the truth and say it is not going to happen and see Mum's distress, dispair and tears intensify or do I give her the hope that may be her stay in the home is just temporary while we 'sort out other options'.

It is early days (see has been at the home for 10 days) and of course hope she will settle soon. If she doesn't and the home ask her to leave I just don't know what I'll do.

The whole situation is really taking its toll on me and my family as I restle with the guilt of not being able to do more - I know I can't get Mum her old life back - but I just do not know what else I can do...

Is it time to lie, I just don't know if I can live with that, but I know I can't cope with seeing Mum so unhappy and distressed either. I know she won't remember our conversations, so is giving her hope of a different (unrealistic) life - where she has back her independence and pride...

I am just tortured with not knowing what is best...

Adrian M

 

[jenniferpa]

Everyone will probably have a difefrent opinion about this, but I'm just going to tell you what I did. When my mother had her strokes she completely forgot that I no longer lived in the UK. She also forgot that she said she'd never expect me to take care of her on a day to day basis. A number of times she asked me why she couldn't come an live with me, and I have to say I told her the truth: different country, different health system and the fact that they was no way on this earth that I would be able to get health insurance for her. I don't know whether she really understood, but eventually she stopped asking (although I don't hold out hope that the subject will never come up again). Like your mother it seems, when she was well she never wqould have asked this of me: even after her strokes she has on occasion said "I hope you have some life other than this" (i.e. the caring). To my mind it would have been cruel to give her false hope: her memory is patchy at best, but I can never be certain what she does or does not retain, and so thought it best to be consistent. Soemtimes now she thinks she's in hospital, sometimes she knows she's in a nursing home, and I don't labour the point. However, when she asks me outright "when will I go home" I do tell her that this is her home now and that this is where she is staying because she can no longer walk (and she can't). I suppose the fact that she has physical limitations has made it easier: she realises (mostly) she can't walk so understand she needs help.

Jennifer

 

[Grannie G]

Dear Adrian,

I`m so sorry it has turned out this way, but can only say I believe it was still the better decision, however painful, if you think of it as for the long term.

Your mother needs to be somewhere safe, somewhere that ensures she will not need to move again, and somewhere near you.

The disorientation and confusion would probably have happened with any move anywhere, and I can only suggest you give her the answers she wants to hear, in the most abstract way possible, just to give her comfort.

I understand your discomfort with seeming to be deceitful, but sometimes it`s the lesser of two evils.

I still have a similar situation 5 years after we moved, but what my husband is pining for, is no longer there, and I suspect what your mother wants back is not suitable for her now either.

It doesn`t make it any easier for you, but I really don`t think anything would.

Take care. I hope she settles .

 

[Kathleen]

I`m so sorry it has turned out this way, but can only say I believe it was still the better decision, however painful, if you think of it as for the long term.

Your mother needs to be somewhere safe, somewhere that ensures she will not need to move again, and somewhere near you.

The disorientation and confusion would probably have happened with any move anywhere, and I can only suggest you give her the answers she wants to hear, in the most abstract way possible, just to give her comfort.

I understand your discomfort with seeming to be deceitful, but sometimes it`s the lesser of two evils.

I agree with Granny G on this one.

My Mum is also in a care home and went through about three weeks of asking, then pleading to be taken home, it was heartbreaking for all concerned.

We stayed away for a week and then only gradually increased our visits, that seemed to help her settle quicker.

She is now very happy most of the time, it was very distressing to see her so upset, but we had no other choice at the time.

Have you asked the staff at the home their advice on the problem?

Whatever your Mum is told by you, needs to reinforced by the staff too.

Thinking of you and I sincerely hope your Mum settles very soon for all your sakes.

Kathleen

 

[Nell]

Dear Adrian,
There are no easy answers to this one. I will join others in saying it may be necessary to "stretch the truth" as you have been doing, rather than try to get her to accept the realities of the situation. This is VERY hard to do, and not everyone agrees with this tactic.

On the other hand, I believe that once a person's mind can no longer follow or understand rational thinking, it is the lesser of two evils to avoid causing them stress if you can. From what you say, your Mum when she was fully rational would not have wanted to come and live with you. The fact that she now says so, and thinks she can look after you , demonstrates that her ability to be rational is failing.

One of the tragedies of this disease is that the sufferer can still demonstrate periods of being quite "with it" and sensible, so we are left with guilty feelings that perhaps, after all, they DO fully understand what is going on . . . . ???

Like other posters, I think it will take time for your Mum to settle and perhaps she will never feel "at home" but you truly CAN NOT do anything other than what you have done. With a wife, children and a demanding job, you have no other choices. Besides, it is doubtful that your Mum would be truly happy if she got what she thinks she wants!! When my Mum was first in the NH she would long to go out and we would take her out or bring her home for the day. Within a couple of hours she would start talking about "getting back" and if we postponed her return for any reason, her anxiety would increase!

I guess I'm just saying that it might be a case of "damned if you do; damned if you don't"!!

I'm sending you best wishes for your Mum to settle quickly - for all your sakes.

 

[Dee]

Dear Adrian

I can only echo the others - my situation was almost identical to yours broadly speaking - my mother had to move closer to me (about 150 miles from home) for the same reasons - she had sold the family house, moved to a bungalow and never really realised it was her home - I think it was what precipated the disease process to accelerate dramatically. All the tears and terror were heartbreaking.

I think it took her a good few months to really settle in the home - I had all the questions and tears too. The guilt was unbelievable. Instead of not telling the truth, I asked her what she thought the best option would be - and then we discussed it all, with all the pros and cons of each one - she was still able to do that and I think that she felt more in control of her life by doing so. I went over and over the discussions we had before the move - how she was happy about the decision and all the reasons for it - of course she couldnt remember any of it but I was able to reassure her that she had felt like that. I was worried that she would exercise her right not to stay too but I appealed to her practical side and that seemed to do the trick. I know everyone is different. I reminded her how frightened she used to be and how she was never alone now etc and gradually it seemed to help.

I know how hard it is - all I can say is stay strong, you had no choice and you have done the right thing by making her safe. It sounds a nice home and as they get used to her, she will to them and it will become normality for her. After a while I was able to take mum out for drives and bring her home for lunch on a Sunday - I have never had a problem getting her to go back but I did wait quite a while before I risked it! Sometimes she asks to go back early - probably my cooking!

I hope it gets better for you.

Dee

 

[Cate]

She had never been happy in the sheltered flat she moved to last year - she never got used to it or recognised it as home.

We moved mum from her home of 20+ years to an apartment near my brother, at her request, she was in the apartment for 6 years, and never settled. Her reasons for wanting to move, rats, dreadful neighbours, people talking about her, neighbours stealing her electricity……….. Now we know, none of this actually happened, it was the start of the AD. We very nearly moved her again to an apartment with a Warden, thank goodness we didn’t do it, it wasn’t too long before we had no choice but to move her to the NH for her own safety, and our piece of mind.

The move days went OK - Mum helped name all her clothes and we didn't have distress as we started the journey to the new home.

Yes all fine was with us, she had however forgotten our previous visit with her to look over the NH, and got mega upset when she realised that this was now home, but with the help of the staff we coped.

The care home were great on arrival, Mum was off for lunch introduced to some other residents, the staff were all welcoming.

Same here, on the advice of the staff we made a hasty exit when she went for lunch, I felt dreadful, worse than leaving my child on the first day of school. They advised us not to visit for a while, and I do believe that this did help her settle.

"Why have you taken me away from my friends and my home?" "when am I going home?" - but not the flat she has just left but the family house and garden she left and sold over a year ago.
Now we have the hardest question of all - "why can't I just come and live with you. I could look after you! - I could look after your house and get you a meal when you come home from work"

Mum swings from wanting to go ‘home’ to a house she had when I was a child over 40 years ago, to the house she was brought up in, then she says but I cannot go back there because the Germans bombed it. Then she wants to live with me, even offering me money.

How do I deal with it, I lie in spades. I tell her I have moved to a one bed roomed house because our old house was too big, and her house had dry rot that’s why she has moved to the ‘residential hotel’, I NEVER mention the words Nursing Home. I NEVER remind her of the problems she was having with falls, setting light to paper, eating rancid food, etc. etc. etc. When she says it’s a waste of money, I tell her it’s free because she is over 80!! She accepts all of this, but of course, we go through the same conversation dozens of times during every visit.

Adrian, in my opinion you say what you have to. We all handle it in different ways, some people I know its fine to tell the truth, with my mum, it just isn’t, in fact it would be cruel, so I just don’t.

I do take heart from the fact that when I talk to the staff, which is on a daily basis, they tell me she is fine, eating very well, sleeping like a top. She has ‘her days’ when she is aggressive, but they cope remarkably well and soon take the heat out of the situation whatever that might be.

She recently had a massive heart attack, but for the prompt action of the staff we would have lost her, so I take great comfort in the knowledge that she is very safe, and so very well looked after.

It may never get any easier for you, but take comfort in the fact mum is safe, and well looked after. Every time I visit, I take a deep breath, and count to 10 before I go in, I never know how the visit is going to go, sometimes its great, sometimes it isnt, its just the way it is.

Love

Cate

 

[Margarita]

Nell The fact that she now says so, and thinks she can look after you , demonstrates that her ability to be rational is failing.

Yes I would also say that is what is happening , that part of the logic thinking is gone & your find that happen for a long while after a move just like your mother has just had .

My mother came to live with me , Just like your mother she was all for it ( but your mother going to care home )

Soon as she was living with me , different story , she use to make me feel so guilty , because I had brought her to live with me , she wanted to go back

Don't know what happen , but why should I have felt guilty . what I had done was logic just like you

This really distressed me - what would happen if Mum did exert her right to leave? What would happen - I just don't have a plan 'B'.

Because they is no plan B . Don't look or think of one as it do your head in , like it did mind , that it does take up all your thoughts , that you have none left for your family

But that was just the start. By the weekend the questioning had got more searching and the carers (this is a specialist home for AD type clients) were being pressed every few minutes with the same questions.

As its a specialist home for AD clients , that must be use to challenging behavior like your mother , when pressed for question they must recognize it

Talk to manger to ease your mind , If that they would ask your mother to leave , just because she has some mild challenging behavior . I don't believe they would , as you say they are a specialist home for AD type clients

I can't remember how long , but it was a long time before my mother stop asking me irrational question about wanting to go back & why did I this why did I that , why don't I ect ....


I can get irrational in my thinking now , my mother with a disease like AZ! would get more Irrational in her thinking ! shame I did not have TP in those days , to recognize what was happening , and I would of said a white lie , that I have read on TP

 

[susiewoo]

My Mum moved into a home 4months ago.
At the beginning I was so relieved because she had been in hospital and I feared for her safety all the time. I then had a period of time of feeling that I was abandoning her because I felt the weight had been lifted off me. I also felt jealous that the staff were beginning to have greater control of her life.

I now feel that I can work in partnership with the staff and make real efforts to talk to them..I am rewarded with snippets of my Mums life that I no longer see....they talk with affection about her and things that she has said to them.
Nothing will bring mum back to me and this is the next phase I suppose.

It doesn't make it easier really but I can accept that she is safe and even loved in a way by the people who do have the daily responsibility of caring for her.

 

[joyportsmouth]

Hi Adrian,
I went through exactly the same thing with my mum back in march,she had been in hospital for 6 weeks and her going back to her sheltred accomadation was really not an option.
The care staff were brilliant from the start,they reccomended we say she was here because she hadnt been well and needed a bit of looking after.I know it was a lie and i felt terriable for doing it but i couldnt tell her the truth,im to much of a coward for that. For weeks all i got was 'youve abandoned me' 'youve stuck me in this home'Sure you no what i mean.Eventually she settled down,in fact she has no idear were she is now,and i find that easier.
Im sure she will settle soon and you will be able to relax a little.At least you no she is being properly cared.
Take care

joy

 

[Adrian M]

Update

Thanks to everyone who has replied to my post. As always your support and advice is candid and a great help.

I have just come back from visiting Mum, and at least for the time I was with her she was calm and to some extent reflective. We talked about the whole situation again - I kept to the truth as much as I could, but avoided the "does this mean I'm never going home" question as best I could.

She understood I believe whilst we talked, but I just know it will all be gone by now...

What was more difficult is that Mum has become obsessive about writing down her questions - on every scrap of paper she can find. She has also written some letters to me in a note book - distressing to read - as they reflect so much her feelings that I have abandoned her - don't have time to include her in my life and have just shut her away. I took her away from her friends and home where she was happy... (We took the decision together in June 2006 to move her to sheltered accomodation but that is all forgotten, she has the happy memories of a few years ago and doesn't remember the latter years and the problems, unhappiness and distress that brought.)

It is sad to read how much Mum is troubled - what is so sad is she knows what is going on - that her memory is failing and "my brain doesn't work anymore"

She has lost her pride and self esteem, and I just don't know how to rebuild her confidence.

Thanks again to everyone for listening - I hope I can help some of you kind people some day...

Adrian M

 

[Grannie G]

. I took her away from her friends and home where she was happy... (
It is sad to read how much Mum is troubled - what is so sad is she knows what is going on - that her memory is failing and "my brain doesn't work anymore"
She has lost her pride and self esteem, and I just don't know how to rebuild her confidence.
Adrian M

Dear Adrian, I know it won`t solve your problems, but I thought it might help you to know how the above quotes from you, reflect exactly my own situation with my husband.

We know there are no two Alzheimers sufferers the same, but the similarities are certainly there and we can only do our best in very difficult situations, where there are no solutions.

Take care

 

[fearful fiona]

Dear Adrian,

Thank you for raising this problem, and dear everyone, thank you for the replies.

I appreciate it, because I am not quite in this situation yet, but know that before too long, I will probably have to look at a home for my mother. At the moment, she and my father (who is very sick indeed and realistically will not last for too much longer) are still at home with the benefit of carers.

My mother is already making hints about how much she would like to live in my house, but it is not possible for many reasons. Like everyone else in the same situation, there is no point in trying to reason with her, because she has lost all power of logic/reasoning. Also I too find that I have to be "economical with the truth" if only to avoid distress to her.

I hope, Adrian, that your mother settles in well. Everyone else seems to have made some really good suggestions which I'm sure you've found helpful, and I know I will when the time comes.

All the best.

 

[Nell]

She understood I believe whilst we talked, but I just know it will all be gone by now...
This is the most difficult part in some ways, isn't it? You go through all the distress (her's and your's), you come to a suitable solution (of sorts ) and go home and worry yourself sick and feel guilty. Meanwhile Mum has forgotten the whole conversation, and it starts all over again at the next visit!! I can't give you any advice or comfort about this, just to reassure you that you are not alone!!


as they reflect so much her feelings that I have abandoned her - don't have time to include her in my life and have just shut her away. I took her away from her friends and home where she was happy...
This is so heartbreaking for you. Also, if you are anything like me you also feel frustrated and angry. It is hard to keep reminding ourselves that it is the illness talking, not our mother. My Mum doesn't say the things your Mum is sayng because she and Dad made the decision themselves to move into care.

But my Mum is a master at making me feel guilty about visits!! When I ring up, I ask her how she is. Answer: sighs, followed by very sad voice "lonely". When we talk, she always puts in a bit about how neglected she is - "no visitors today". When I visit, I have to stay 3-5 hours,and she always says "Can't you stay longer?" or "Aren't you coming back today?" or some such, which adds to my guilt!!


It is sad to read how much Mum is troubled - what is so sad is she knows what is going on - that her memory is failing and "my brain doesn't work anymore"

She has lost her pride and self esteem, and I just don't know how to rebuild her confidence.

My Mum says the same thing - she despairs about her failing memory. However, on the bright side, as her memory (and mind ) get worse, this is less of a problem. She still doesn't believe she has anything wrong with her except a failing memory, but it no longer causes her the same anguish as it did in the beginning. I have to say, I think the old adage "time heals" is the only thing we can rely on here. The sad part is that it comes at the expense of further deterioration. Frankly, at this stage, I'd prefer to see Mum deteriorate a little to save her anguish. I'm not at all sure if I'll continue to feel like this after a while, but at present, ANYTHING is more tolerable than seeing her in acute distress.

Dear Adrian, not a very cheerful post I'm afraid! Just want you to know you are not alone. Keep holding on to the knowledge that you have done what had to be done. If you DID undo it now, there is no way to be sure your mother would be any happier - besides which, there ARE no other options.
Thinking of you and sending you best wishes.

 

[Grannie G]

Frankly, at this stage, I'd prefer to see Mum deteriorate a little to save her anguish. I'm not at all sure if I'll continue to feel like this after a while, but at present, ANYTHING is more tolerable than seeing her in acute distress.
.

Oh Nell, I do know what you mean, I feel just the same.

Is there any other condition on earth, where we feel there would be some benefit from deterioration?

Love xx

 

[Taffy]

[How do I deal with it, I lie in spades.
Adrian, in my opinion you say what you have to. We all handle it in different ways, some people I know its fine to tell the truth, with my mum, it just isn’t, in fact it would be cruel, so I just don’t.]

[It may never get any easier for you, but take comfort in the fact mum is safe, and well looked after. Every time I visit, I take a deep breath, and count to 10 before I go in, I never know how the visit is going to go, sometimes its great, sometimes it isnt, its just the way it is.]

Hi Adrian, I do sympathize with you I am going through similar but mum never agreed to go into care, she had no idea, but thats the way it had to be to get her there in the first place, and I agree with Cate and her reply because that's how it is with me. I don't feel guilt just overwhelming sadness, maybe, it's one of a kind. I do hope that things soon become easier for you and your family. Taffy.