Such a rapid decline

[Lucy Charlie]

My sister and I have just put our 85 y old mother into a care home. Such a shocking thing to have done and we both are guilt ridden.The dementia seemed to develop over a period of 5 weeks. The final straw was fire related, so she wasn't safe.
We seem to be the only ones who hadn't noticed this a few months ago and now everyone is saying "oh yes, I had noticed a few things". We hadn't at all. The phone calls were incessant, but plausible.
The CH is lovely and staff are so kind and no doubt that we are lucky there.
She has been there two weeks now, and each time we visit, she wants to come home and live with us. So difficult to say no. It's not feasible for that to happen. she doesn't know where home is (after 2 weeks). How can that be, that she can forget something as significant as her home? She remembers the cat though!
Sorry to ramble.I am feeling a little unsupported myself at the moment. Does the guilt go away?

 

[AnneD]

It is hard!

I had to put my mum into a care home in July, 2012. She too deteriorated so quickly with constant UTIs.

Although I know I had no choice it doesn't stop me feeling guilty. Mum blames me for putting her in the home as she thinks I wanted a holiday (if only she knew - the doctors said she had to go into a home - not me).

I think we have to take comfort in the fact that we know our Mums are being well looked after and they are safe! For me personally, I know I can go to bed at night without worrying about whether she is ok and know that the phone won't ring because she thinks its daytime!

 

[Christin]

Hello Lucy Charlie, welcome to Talking Point.

I am sorry to read about your mother, this is a very difficult time for you all. In my own opinion, two weeks is a relatively short time and I hope that she will begin to settle in the coming weeks. Have you been able to take in some of her belongings, favourite items, etc, to help her feel more at home. A memory book, with photos etc for her too look through with staff and visitors is a good idea.

As for guilt, well I think you have to keep reminding yourself why your mother is there. She is safe, and has company and you seem happy with the CH. That's far better than her being at risk at home on her own.

Don't be hard on yourselves.

Very best wishes to you all.

 

[Helen33]

Hello LucyCharlie,

I do hope that you find yourself feeling more supported by Talking Point. It is a massive support to me.

I am sorry to read about the quick decline in your mother's condition but glad to read that she is now in a place of safety where you are happy about her care. This is a blessing and one worry less.

With regard to your mum asking to be taken home by you and your sister, perhaps it would help you all if you didn't say 'no' as such but something like 'you need to build up your strength first' or something similar?

As for the guilt, it must be different for different people. I don't dwell on guilt personally unless it is something that I really need to address. I cannot see what you are actually guilty of apart from making sure your mum is safe and ensuring she is in a good care home. The ravages of this illness are not your fault and it is not your fault that your mother needs more care than you can offer. It sounds like your mother needs round the clock care now and she is in the best place for that.

Love

 

[FifiMo]

Hiya Lucy Charlie and welcome to Talking Point,

In a way, you saying that you didn't notice the deterioration in your mum over a period of time, shows that you were closely involved with your mum to the point that the subtle changes on a day to day basis were not noticed by you. Sometimes we all look back and see what others saw, but bear in mind that others might have noticed more because they had not seen your mum for a while and that is when things are often more noticeable.

There should be no guilt on your part as you have done what is necessary to take care of your mum's health and welfare. She is now somewhere that she is protected and no longer is at risk and vulnerable like she was when at home. Your mum might be in a care home now but that doesn't mean that your role as carer and supporter has stopped. It might in fact improve now that someone is taking away the burden of all the day to day management of her needs and that can leave you to spend quality time with her and enjoy her company.

As to her asking to go home...You often find that this happens with people with dementia and it is referred to as a symptom of Sundowning. It was considered at one stage that sundowning happened in the evenings after the sun went down (hence the name) but it can in fact happen at any time. When someone is sundowning they are in a higher state of confusion and sometimes become agitated and even aggressive. The mention of wanting to go home is thought to be a reference to wanting to be somewhere that is familiar to her, where she felt safe and secure. Often reference is made to the home she lived in with her parents and mention might be made to her parents and her siblings etc but in the context of her being a child. The difficult thing is that of all the things you can do for someone with dementia, this is the thing that you can never recreate for them. The advice given is to deflect the discussion by saying things like, "Lets talk about this tomorrow...it is dark outside now/the buses are not running now/it is too cold for you and I to be out and about this late." This can pacify them at the time, until the issue comes up again. We all have to tell "little white lies" as much as we wouldn't normally do so. If telling an untruth provides comfort and reduces distress then that is what we all end up resorting to.

Hope this helps, and please give yourself a pat on the back for having put everything in place for your mum. She is very lucky to have family like you around her to support her.

Fiona

 

[at wits end]

My gran was similar, people were telling me she had dementia but i didnt see it.

Then after an illness she move dinto respite for two weeks and asked to come home constantly. I arranged for her to go back to her home of 40 years with a care package and thought sorted! But then second day at home i heard her on the phone to my Uncle telling him she wanted to go home. So we had a chat and she said she meant her 'other' home (?).

Next day she got a UTI and fell three times and ended up in A and E. So dont be too quick to listen to the going home tale, she's not herself.

x

 

[Lucy Charlie]

Thank you for your replies.

Hiya Lucy Charlie and welcome to Talking Point,

In a way, you saying that you didn't notice the deterioration in your mum over a period of time, shows that you were closely involved with your mum to the point that the subtle changes on a day to day basis were not noticed by you. Sometimes we all look back and see what others saw, but bear in mind that others might have noticed more because they had not seen your mum for a while and that is when things are often more noticeable.

There should be no guilt on your part as you have done what is necessary to take care of your mum's health and welfare. She is now somewhere that she is protected and no longer is at risk and vulnerable like she was when at home. Your mum might be in a care home now but that doesn't mean that your role as carer and supporter has stopped. It might in fact improve now that someone is taking away the burden of all the day to day management of her needs and that can leave you to spend quality time with her and enjoy her company.

As to her asking to go home...You often find that this happens with people with dementia and it is referred to as Sundowning. It was considered at one stage that sundowning happened in the evenings after the sun went down (hence the name) but it can in fact happen at any time. When someone is sundowning they are in a higher state of confusion and sometimes become agitated and even aggressive. The mention of wanting to go home is thought to be a reference to wanting to be somewhere that is familiar to her, where she felt safe and secure. Often reference is made to the home she lived in with her parents and mention might be made to her parents and her siblings etc but in the context of her being a child. The difficult thing is that of all the things you can do for someone with dementia, this is the thing that you can never recreate for them. The advice given is to deflect the discussion by saying things like, "Lets talk about this tomorrow...it is dark outside now/the buses are not running now/it is too cold for you and I to be out and about this late." This can pacify them at the time, until the issue comes up again. We all have to tell "little white lies" as much as we wouldn't normally do so. If telling an untruth provides comfort and reduces distress then that is what we all end up resorting to.

Hope this helps, and please give yourself a pat on the back for having put everything in place for your mum. She is very lucky to have family like you around her to support her.

Fiona

I cant believe how understanding others are ,on this site. Thank you so much.
She has no recollection of my dad passing away 7 years ago. I deflected the explanation as it seemed it would be news to her and it would be like hearing it for the first time. She would ask the same question the next day and we would go through the same emotion as if it was the first time she had known about it. Is it best to explain that he has died or change the subject and "deflect". I feel awful if I am trying to drill it in to her that he isnt here. The reasoning skills are no more.

On a more amusing/interesting point..
I went to see my mum on Tuesday and she had decided to take the 25 shiny balls off the CH's Christmas tree for me to "take home". the Carer was really nice about it and said "Oh Bless". I was mortified at the theft ! . managed to hide them behind the paino before anyone else found out about the misappropriation !! They said it was a normal "Magpie" effect. I just wonder what else is to come with this level of dementia. She would never have taken anything.
Once again, thank you for all your help and advice. LC. xx

 

[GrannyE]

Same story with my Mum

Typing this trying,not to cry.Same thing happened with my Mum,taken in to Hospital 5 weeks ago with a delirium,previously had mild cognitive problems but doing well at home with family support.Now in an assessment unit waiting to find a suitable care environment for her.She has very little short term memory and asks us when she is going home all the time,we've been to visit her every day and taken her out a couple of times,she actually is quite happy when I take her back to the Home.I feel really guilty as we are visiting lots of care homes and assisted living developments and she dearly wants to go home,and very resentful to another sibling who makes no real effort to visit or keep in contact,I feel like not talking to her any more,do others feel like this or am I just being nasty.

 

[FifiMo]

Hiya Lucy Charlie,

With regards to forgetting someone has died, the advice given on how to approach this is that at the time of death, tell them that the person has died, if they later forget then don't persist with telling them as it has the same effect as them hearing it for the first time and aside perhaps from the shock, can start a whole grieving process over and over again. If they are asking about the deceased folks then you can just deflect and say things like "Oh they are away on holiday just now" or "I haven't spoken to them this week but i'll send them a letter soon" or even maybe reminisce about the person in question - say something like "Oh, I was just thinking about XXX the other day and was remembering those funny slippers she used to wear." Yet again, this at least gives them the chance to communicate in whatever way they can which is always good.

GrannyE, Welcome to Talking Point,

I just wondered if both of you would enjoy reading the following thread because it gives hints and tips about communicating with people who have memory problems and also gives some insight as to how things are from the dementia sufferer's point of view...

http://forum.alzheimers.org.uk/show...ionate-Communication-with-the-Memory-Impaired

Hope this helps,

Fiona

 

[Sherbert lemon]

I put my mum in to a CH this July and my dad was admitted to hospital. So very very hard. The guilt never goes away but I find its getting easier the more I realise through TP that I am not the only one making these horrible and difficult decisions. Dad thankfully is ok, but I will never forget those 24 hours when I walked in his footsteps and looked after mum. She constantly asks for her mum and dad and worries that they will worry if she's not home on time. We tell her that we've just spoken to them to let them know she's ok. I know its little white lies but the truth would be too distressing for her. Keep strong, tell the little white lies and try and smile when they do some of the oddest things! X

 

[Glenisla4]

Your comments mirror how I am feeling. Mum has just been taken back into a hospital, after another fall, more for her own safety than for any particular injury. Another emergency drive, in the middle of the night, for me. I have known that we are getting to the stage of looking at care homes but I have been obsessing about her being in her own home for Christmas, I dont think that is going to happen now although , if she is basically stable, I would attempt to bring her back for the day. I know this is going to be our last Christmas in the house she has lived in for 60 years, so sad and so much what I didnt want to happen.
I am hoping that I will be given time to find the best care home for her, I dont want to be pushed into just finding her a bed, maybe Christmas will buy us a bit more time or maybe she will regain enough clarity to return home, not too hopeful though...
Its strange, life is stressful but I am not as emotional as I was a couple of weeks ago, I seem to have gone onto automatic pilot, probably due a backlash in the next couple of weeks, Never saw all this coming, it was only a few months ago that she was driving!!

 

[stanleypj]

As to her asking to go home...You often find that this happens with people with dementia and it is referred to as Sundowning.

Fiona

I've not seen the 'want to go home' statement being referred to as sundowning. I'm surprised if it is, as this can only be confusing.

Sundowning already means a number of different things to different people but involves agitation happening at a more or less specific time of day. The agitation might include 'want to go home' but that doesn't mean that these two phenomena should have the same name. Its difficult enough to understand much of the language and many of the concepts used when discussing dementia as it is.

As to what 'want to go home' means I agree with the general gist of the explanations. And it is very unnerving when you first hear it. But in some way it's a logical response to what the person must be experiencing. Who doesn't 'want to go home' when their world is falling apart?

 

[FifiMo]

Stanley,

Thank you for casting your eagle eye over this - it should have read "a symptom of" not the entirety of sundowning which of course has many facets and can affect different people in different ways.

Thanks once again, post has now been edited to reflect original wording/intention.

Fiona

 

[susiewoo]

My Mum has been in a home for many years now and it took an awful long time for me to come to terms with it. Now I know she is well cared for and in fact I have seen real affection from the staff towards Mum. They know her better than I do now or rather the person she is now ...not my lovely Mum.
There is always guilt and you always feel that you could have done things differently but it is true that time is a great healer.
You are at the beginning of a very raw experience and I hope you keep visiting this forum because the people here are the best support you could wish for. Also try to speak to other relatives who will all be as scared as you but you can support each other even with the odd kind conversation when you feel your world is out of control.