Care homes

[janetruth]

Hello Margaret

I am also 55 and for the life of me could not picture my Mum wearing jeans and doing all the things we of our age do, when she was the same age.
It was always Dad that features in my memory of taking us swimming, walks, pictures and on the park etc. Mum was always, busy, washing, cooking ect, no labour saving gadgets in those days.

In defence of your Mum, maybe she brought you up in the same way as her own Mum. We learn by example and being an only child ( the one we practice our Motherly skills on) can have it's pros and cons, just like being one of many.

Because times have changed we want to be more open and interactive with our children. Perhaps your Mum is so conditioned that it is now too late for change.
When you visit your Mum and i assume give her a big hug and kiss, telling her that you love her, you can do a crossword puzzle, by asking her the clues.
Maybe reading her the newspaper ( the funny bits) or storys from The Bible, put a CD on ( 30's songs work with my Mum, especially George Fornby) her kind of music.

I really hope things change for the better, for you and the situation as it stands.
Take Care
Janetruth x

 

[westiedoglover]

Copeing with Mums condition

Hi Margaret

I am new to the site just registered tonight. Don't know how to post a thread? so I am replying to yours in order to get on track so to speak.

My Mum moved into a care home quite close by to where I live on 3rd August. I was really looking forward to her moving there as things had been really difficult at home as Dad could not cope and she ended up in hospital.

Unfortunately things have not turned out as I would have wished. I expected to be able to take her out and about but when she was in hospital waiting to go into the home she had a fall and broke a small bone in her back and since then she has not walked. Since she has been in the home she has been really down and depressed. Because she has very little speech it is hard to understand what she is feeling.

Ske refuses to eat and drink most of the time and has just spent another four nights in hospital again because they thought she was dehydrated. Whenever we try to approach her she starts screaming and thrashing her arms about. She has only occasional lucid moments.

Because Mums deterioration has been rapid (she was still working last year at this time) I am finding the whole situation very stressful and any advice would be more than welcome.

 

[jenniferpa]

Hello westiedoglover, and welcome to Talking Point.

Firstly, technical issues: if you wish to start a new thread you go to the appropriate forum (e.g. this one) and on the main page you should see a blue button with New Thread on it (it's on the left hand side at the top, immediately under the darker maroon (well it is on my screen) status bar.

If you want I can split this post into a new thread for you, or it's fine to leave it where it is if you would prefer.

Rapid deterioration is one of the most difficult things to deal with. To be honest, my first thought (and please note we can't and won't diagnose on the baord because we obviously can't, and anyway none of use are medical people) is this is unusually fast for Alzheimers Disease, and I would be wondering if it was a correct diagnosis, However, even if it is (or even if it isn't) it's still dementia of one form or another, and the rest of your family are left managing the situation. I assume the hospital has ruled out any underlying infections, because as many of us can attest to, a urinary tract infection (UTI) can cause a dramatic downturn. Is your mother on any medications, because side-effects from those should be considered as well? What about pain relief? With your mother's history I would want to be absolutely sure that she was receiving effective and appropriate pain medication.

Sorry for all the questions: let me know if you want this thread split off.

 

[Grannie G]

Hello Westiedoglover, welcome to Talking Point [TP]

To start a new thread, click on Support for people with dementia and their carers, at the top of the page. This will take you to the front page of the thread. At the top left hand, you should see a blue tab, saying New Thread. That`s how you start a thread. When you start a new thread you need a title. But when you reply to a post you don`t need a title.

I`m so sorry about your mother.
When people go into residential care homes, it`s usually the last resort because the are either at risk in their own homes, or need more care than the family can provide. So we can safely say the majority are in a weakened state by then.

Then, as in your mother`s case there is the additional complication of a fall, or possibly an infection, which makes matters worse.

It`s absolutely dreadful to think your mother was still working this time last year. Is she quite young? It seems a lot of younger people with Alzheimers deteriorate very quickly.

Have you discussed her condition with her doctors? I would if you are so worried. There might be some medication to help her depression.

I`m just thinking, if you are finding it so hard to understand her rapid deterioration, you can imagine how it`s affecting your mother both physically and emotionally. It really doesn`t bear thinking about.

Take care and keep posting to let us know how she is. You can post anywhere, don`t worry. You`ll soon get to grips with it.

Love xx

 

[Margaret W]

I have just got to grips with threads and posts, so I will come back to Westiedoglover shortly.

Thanks to everyone else who has offered support and advice. You are stars.

But - there is no way my mum does crossword puzzles or crafts or knitting or games of any sort. She did have a daily paper, but another resident commandeered it so mum never got to see it, and we cancelled it. I take her one when I visit.

Visits are just a chore. An absolue chore. I have nothing to talk to her about at all. She has done nothing, and I have done nothing that she is interested in. I am a senior lecturer and programme leader at a University, I have loads to talk about if she wanted it, but she just thinks I am a teacher. She would not at all be interested in curriculum changes, rooming problems, dsiciplinary hearings. I am an avid reader, she would not be interested in that. She doesn't even watch Countdown any more!

Ah well, so sad.

Thanks everyone, I am just miserable about it all.

Margaret

 

[Brucie]

Hi Margaret

I'm so glad you're able to find things on TP now.

Visits are just a chore. An absolue chore. I have nothing to talk to her about at all. She has done nothing, and I have done nothing that she is interested in. I am a senior lecturer and programme leader at a University, I have loads to talk about if she wanted it, but she just thinks I am a teacher. She would not at all be interested in curriculum changes, rooming problems, dsiciplinary hearings. I am an avid reader, she would not be interested in that. She doesn't even watch Countdown any more!

I understand your frustration.

I think you have to adjust your expectations now.

It is not a question of what Mum wants any more. She simply can't be interested in things - it is the nature of the condition. She is not trying to be difficult, in fact, she can't really try to do or be anything. Dementia stops that after a certain stage.

It is not that she doesn't want to talk about your university work - she may no longer know what the word university means. she may retain the word teacher because we learn that at a very early age and it may stick longer than most words.

How could she read? That takes the ability to concentrate, to comprehend words - Mum probably can't read at all any more.

Television becomes something quite incomprehensible, and difficult to differentiate from life that is going on around them, and in which they feel they no longer have a part.

So what to do?

Well, firstly re-set your expectations so that visits are no longer a chore. the act of visiting may always be that, but try to make time with Mum something special.

You have the advantage that many people on TV have all the time - you can spout total rubbish and you have a captive audience that can't tell you so.

Whatever you say to Mum, she will not retain.

Perhaps imagine when you visit that she comes from a foreign land and speaks no English, while you speak no words of her language. Try to communicate at a basic level. Smile, touch her hand, when you speak, keep your voice bright and breezy.

She may not understand, but tell her about your day, your frustrations.

Say how nice she looks, how tidy the place is [even if not], how that other person over there walks in a funny way, etc.

Imagine you are in a drama class. Improvise.

It might all seem daft to you, but it may make a difference to Mum....

 

[Christinec]

Hi
I have been following this thread with interest as I think I have also had a less than normal relationship with my parents and think I can understand how Margaret feels. Every "family" is different. I look at some of my friends and the positive way their parents are dealing with old age and illness and feel sad about our situation.

Mum has also gone in to a home recently following much conflict and this has been very detrimental to the relationships within the family. Practically no communication at present. That is another story but I almost envy anyone who can make a decision based on their views of the situation and only has to live with their own conscience rather than being the one who is blamed by everyone else for refusing to give up their work, marriage and children to take on 24hour care.

Brucie your reply made me smile - when I visit the home it is like a performance and in fact I can quite enjoy going as long as I can summon the energy to do the performance.

When she was well (seems so long ago I can hardly remember) there was so many complications that we had a difficult relationship. Now she is pleased to see me as I think she has forgotten all the things that make me a less than perfect daughter. She really has no interest in my work but as you say for quite a few years now this has been beyond her and never had any interests although I accept this might be fairly common for women in her generation. She used to follow the soaps but can no longer understand what is going on.

I read somewhere, perhaps on this site that the visitors role is to make the person being visited happy even if you drive home in tears. A bit of advice that has helped me over this long year. Looking at photos seems to be something she loves even though she cannot always remember who is who and off course we can look at the same ones over and over as she forgets within a minute what we have looked at. I have hundreds of photos which I normally never have time to look at so this has been good for me too. I am trying to make the best of the time we have left together.

I do tell he about the frustrations of the day and the family and I am sometimes suprised by her common sense and sympathy even though the AD means she wont remember a thing by the time I have finished the next sentence. She is actually generally very nice and supportive of me now - this was not the case in the past.

I think I probably do take the opportunity to spout quite a bit of rubbish during visits (more than usual I ask myself?) but as long as it makes it a good vsit for Mum that is fine.

Just occurred to me that I find visiting with anyone not really close to me very stressful and that is pobably because I can only "do the show" with people I really trust alongside.

I suppose because she has been ill for so long my expectations are lower and this has been a long difficult learning process. It must be much harder if changes happen quickly and your expectations have not lowered - in retrospect I can remember difficult times before mine did. Horrible illness.

Talking Point has really helped me a lot both emotionally and also in practical advice.

 

[Grannie G]

Dear Christine,

You haven`t really been welcomed to TP yet, so let me offer you a warm welcome.

There is such a variety of family dynamics on TP, you are sure to be able to identify with someone.

I liked your use of the word `performance` as this is how I used to feel when visiting my mother. I would hype myself up, put on my brightest smile and enter, centre left.

The performance lasted the duration of the visit.

Like your mother, mine forgot all the conflicts from the past, but unfortunately I wasn`t able to, hence the performance.

So don`t feel alone. Not everyone is lucky enough to have had the warm, loving and secure upbringing we all crave. Many have had variations of your upbringing, and mine.

Please keep posting on TP. The warmth and support you will get here will go someway towards making up for what you didn`t have.

Love xx

 

[Kate P]

Margaret and Christine,

I wish I could reach out and give you both great big hugs. It's so sad that your realtionships with your mums have not been all that they could have and that now it's not something that will ever change (although it may never have changed anyway).

I find spending time with my mum difficult - she isn't in a home yet but I take her out when I can to give dad a break and visit almost daily.

Mum is actually unable to speak now, other than occasional words, and is either very aggitated and aggressive or is "zoned out" and doesn't seem to even know that I'm there.

It makes time with her so difficult as keeping up conversation with someone who can't communicate back is just soul destroying for any length of time. I really don't know how my dad manages (well I do actually - very long phone calls with me when mum's asleep, as my phone bill testifies! )

Christine, I have only this week noticed that mum seems to love going through photographs (although the speed she goes through them at, I can't imagine that she's really seeing anything). I was thinking that I could set up different photo albums so we can go through them and change them each time and it would pass some of the time.

To be honest it's good to take my daughter with us sometimes and we feed the ducks or something as it gives me something else to focus on other than mum. I don't quite feel the pressure to keep up a stream of conversation when I know nothing I'm saying is sinking in with her.

Is there anyone who could go with you Margaret? Someone to be a "buffer" so that you are getting some response back from someone and your mum can still feel involved as far as she would like? Would she sit and do a jigsaw with you so that you have something else to occupy your mind?

I admire you both (whether you like it or not Maragaret! ) because you're ploughing on and doing what needs to be done despite a significant past that would give you every reason not to.

For me it's not your thoughts that define you - any resentment, guilt or anger - but your actions. I think your actions speak plenty for you and I'm thinking of you both.

 

[Christinec]

Thank you for the welcome and the hugs.

I am not sure I can contribute much but will if I can.

To be honest being aware of how much others cope with on a 24hours basis is very humbling. I have never cared on a daily basis and do not know how those of you who do cope. I think you could all do with hugs.

My Mum always wanted to stay in her home and I do feel guilty but I also know that it would never have worked for ever for a number of reasons. I console myself by reminding myself that her home is wanting to be where ever she was happiest in her life and as such does not exist anymore.

It was inevitable that she went to a care situation. I am very much hoping that she will eventually find the place she is in a good place to be and I can see that she is becoming more used to it in many ways. I did do my very best to make sure she went to the best place even if it is quite a bit away. Hard to balance ease of visiting against less than ideal services.

It amazes me reading the posts here how services available vary from one area to another. Post code lottery? There is no chance of anything more than two or three short visits for personal care in this area as far as I know. Many people have only one. Only other option is day care often miles away and lunch club one day a week. Reading here I have the impression some areas can provide much more support. In this area there is now no routine respite. I think most homes will only take respite at short notice if they have an unfilled room- no booking ahead when the carer wants to book a holiday. At one time it was possible to book ahead. Maybe I have it wrong. Having said that my Mums CPN and her staff have been very good so far as has SS.

Anyway thanks to you and apologies for rambling on.