a bit down

[Lulu]

I know that my situation is nowhere near as bad as many who write in, but I am feeling so depressed at the moment. Mum is still able to convince people that she is entirely normal, yet here we are working hard in the background for it to be so.

We have been away on holiday, taking Mum with us as we felt it was by far the easier option at this stage -and there was always the chance that she may enjoy it. But it was a disaster from start to finish. Even on the day we left, I don't think it had sunk in that she was going anywhere -she had certainly made none of the preparations I had listed for her to do (I had to do it all). She was like a fish out of water for the entire time, and probably not fully understanding anything that was going on. She became unkempt, quiet, then sullen, then downright sulky, not speaking to anybody. My daughter likened her to a teenager, and I couldn't believe what was happening as it was upsetting everyone except Mum. Then, when we got back, she was full of the joys of spring once more ...leaving me shattered -and very down.

We're now back in the routine, and Mum doesn't even know she's been away -at least I don't think she does. A friend has asked me how it all went, and I so much want to tell people how it REALLY was, but I now even feel it's useless going into it all as some of the things that happen are so subtle -nobody else would understand -and I then wonder what's the point of talking about it at all. It's just a waste of precious energy. I miss my Dad, who I wish had told me more than he did before he became ill. It hurts so much sometimes......

 

[Sheila]

Dear Lulu, please don't bottle it up, tell us on TP all about how you feel right now. There is not one of us that won't be able to identify with at least some of your feelings believe me. I was talking to a close friend the other day, she has parents with AD, she said how itwas so hard to explain to those not experiencing the illness, just what it does to you, not just the sufferer, the carers and family in general. I so agree with her there. We all tend to try to put on a brave face, make things seem tickety boo etc, whilst underneath we are constantly walking that tightrope! Your Mum didn't understand the need to pack because she couldn't relate to having a holiday now. She was like a fish out of water while you were away, totally unable to understand what was happening or enjoy/appreciate the change at all. When she got home, she was just so relieved to be back where she felt safe, that is why she has acted this way. Meanwhile, I can hear your fingernails as they scrape down the wall, (at least mine used to!) Hang on in there, tell us all the bits that got to you, we all learn from the experiences of each other on here, share it, we care, we are always here. Thinking of you, love She. XX

 

[Norman]

Lulu
I have to do everything for my wife now.
packing for a holidaywhich is as you say not remembered at all.
One problem is when taken out of routine the panic sets in because there is nothing familiar.
You found this. your Mum was ok on her return home.
I do understand your feelings,but remember when they are awkward it's not because they are really like that ,it's because they don't remenber how to do things.
Post whenever you need
Best wishes
Norman

 

[connie]

Lulu, we have just had a very good weekend. I am exhausted from all the organising, making sure Lionel was never left 'alone' or out of things.
We saw the CPN today, and when I was telling her about the weekend Lionel said " I am sure it was as Connie says, but I can't remember any of it"
All that effort. for what. As Norman says - day by day. Connie.

It was my birthday, and one daughter-in-law said, I havn't bought you anything - I want to do something for you. She has garanteed me 'Lionel' sitting for two days, one in July and one September. How sad.

 

[Lulu]

I really have nothing much to complain about, I know, but the realisation that Mum was now unable to take any enjoyment from a holiday was quite a blow, along with the knowledge that in future I shall have to either put her in a home or else have support for her in her own home. The fact that I have to take the initiative with all relatives, keeping them informed, letting them know the dates she is away, where she is going -never do they phone me to ask how she is, how I am. Perhaps they phone her, but I would never know that, even though I have explained that she can't remember anything.


I no longer find it worth the effort to try to explain to people what is happening, and whereas before, I would write an odd letter to a friend, detailing how things were, now I can't be bothered to do that. Nobody, unless they have experienced this, would know what it's like.

Thanks once again to all. What would I do without you now?.

 

[Shakey1961a]

Dearest Lulu. At the start of things going wrong you notice all the strange things more and they shock you. Mum was cooking a meal once and said "When's your Dad coming in?" At this I panicked a bit as he was sitting in the lounge, but she thought he was at work. Dad had been retired 7 or 8 years then. She went into the room and looked and there he was, but then again later she remarked about him getting off the bus. Comments like that and other things shock you badly. We tried to take mum to a show in Liverpool a few years earlier, Phantom of the Opera to be exact, but when she got to the city she said it all looked "Wierd" and wanted to go home. She was born in Liverpool and knew the city well!

Unfortunately it's all part of this incideous disease. Just take it day-by-day and enjoy your mother while she's still here. You may have seen the threads about my problems, but when I saw mum for the 1st time yesterday she smiled at me and that was after not seeing her for 9 months.

Don't be worried about feeling down, but do things that are comfortable for your mum. Familiarity is the key word, then you won't have to struggle with things. If she knows her surroundings or a trip to the local town that she likes then do that, and she'll really enjoy it, but don't worry if she says something strange.

My prayers and thoughts are with you.

Steve

 

[frederickgt]

Lulu,Oh dear!

Lulu,it shocked me to see your remarks about your mums holiday,I am a very new member,I took my wife for a world cruise,we were away for three months,mostly she enjoyed it,but there were times when she said "Can we go home now" in australia!
My wifeis 71,and I am 77,my wife has said many times she wont go into a home,we have a daughter living with us,but she has her own carreer to think of,
Anna,my wife has said she would take an overdose if she was left on her own,(me passing away) I cook,shop,and see that she takes her aricept,and i hug and kiss her because I love her,but she is changing before my eyes,she is now like a small child utterly dependant upon me,I have to be very patient,she constantly loses things,she never knows what day it is,she has asked me to take her home to her mother(who died 20 yrs ago)On our trip I took 200 photos,and I show them to her,and they help. we will be going away again for a short 21 day cruise to the states.She is becomimg aggressive,and doesnt recognise our daughter
as her child.
God give me the strength and the patience I need for both our sakes I pray.Dont give up Lulu,I wont either!

 

[Norman]

Hi Fredrickgt
Welcome to talking point.
I read your posting and recognised so much of what is happening to my wife.
Seven years on Aricept totally dependent on me for everything.
From getting up in the morning to going to bed at night,and everything in between.
You don'say how long your wife has been diagnosed with Alzheimer,s?
I admire your courage in going on a cruise,we haven't been abroad now for some years ,we used to like coach holidys,been all over UK and Europe.
We manage Weston- super- mare,don't always last the week out though.
It's ironic,young Son has bought a villa in Portugal,no use to us now I am sorry to say.
Whenever you feel the need to talk there is always someone here to listen and try to help
best wishes
Norman

 

[frederickgt]

ty norman

This very night anna fell out of bed,i think I may have to arrange a hospital type bed that she cant fall out of,her mother did the same thing and broke her hip,Anyone any ideas?

 

[Sandy]

Dear frederickgt,

Hi and welcome to talking point. One of the most useful services, as far as helping us with things like beds and adaptions for showering, has been the Occipational Therapist (OT). My in-laws were assessed by the NHS OT based on a referral from my father-in-law's social worker and she arranged to have various bits of equipment loaned to them free of charge.

Does your wife have a social worker yet? If not, it is something that I would encourage you to put in place as there can be long waiting lists for initial assessments. I would think a GP could also arrange for an OT to discuss the bed options with you and your wife.

Take care,

Sandy

 

[Lulu]

I didn't mean to shock anybody. Perhaps I seem uncaring? I think it was a shock to find that Mum was struggling quite so much out of her usual routine -I was stunned and wanted to cry, shout, hug her ..anything that would make things better again. I think it would be kinder in future to support her in her own home, or find respite care for her during any holidays. A year ago I wouldn't have given it a thought, but now I see it would be the best thing for her. She enjoys a morning out, or an afternoon, but beyond that she is struggling. She seems oblivious to what is happening to her, and doesn't consider herself to have any problems whatsoever.
It has ben comforting to know that you have to do every last thing for your wife Norman, and Connie too, having to organise everything to the point of exhaustion. As long as I know this is normal, then it makes it better. Thanks for everything.

 

[daughter]

Hi Lulu,

No, definately not uncaring, just struggling to cope with the many elements of this dreadful illness. As Steve says,

"at the start of things going wrong you notice all the strange things more and they shock you".

Different people cope in different ways - and sometimes we don't cope. Dare I say that it is also different for partners of dementia sufferers than for their offspring? We love them dearly but in a different way. As for this being 'normal', I'm not sure I'd use that word for it.

The realisation that taking your Mum away is too traumatic for her is a loss for you too - we had to come to terms with that about my Dad. He used to love the family holidays where we used to hire a huge house and all the extended family would go away together. He was always playing games of cricket etc in the garden with the grandchildren. Now, as you say, an afternoon ride out in the country or a stroll around the block is kinder to him.

Take care,

 

[Lulu]

Thank you for replying. I was worrying in case I'd gone too far in my complaints about mum -afetr all, she is my mum! I feel awful complianing about her. But you are right. It isn't quite the same for the offspring .... I want to make sure everything is just right for her, at the same time make sure everything is right for my children AND try to have some sort of life of my own ... Thanks Hazel

 

[Norman]

Hi Frederick gt
Sorry to hear about your wife.
The consultant has an OT in his team ,he may be able to help.
SS also has an OT service,if you have a social worker they could arrange it for you,if you do not have a social worker apply as soon as possible for an assessment for your wife and for yourself,you must get into the "system".
We had a very good OT from the consultant's team,she arranged fitting of rails etc.
Have a look at factsheets Nos 503-428-418.Top lefthand corner on this page.
Good luck
Norman

 

[Canadian Joanne]

Lulu, don't worry about complaining. You're not complaining, you're venting. Which is something you need to do to keep your sanity. I'm amazed & impressed how you were brave enough to take your mother away for a holiday. My mother, who has been in care for over 4 years now, is okay with a little drive or a very short walk, if she's having a good day. Today she was having a bad day & said to me "I should have chopped your head off when you were a baby." The good thing about that is I think she meant I was her daughter. Since I'm nearly always a sister now, it was nice to be a daughter, even if she wanted to chop my head off.


But I have my days when I want to scream at her. My particular bugbear is when we go outside - she almost always makes a comment on the weather as soon as her big toe is out the door. "It's hot." "It's cold." "It's windy." She's like Goldilocks but it's rarely "Just right." I realize she's just commenting but the tone sometimes gets to me. I usually manage to bite my tongue. I've nearly hemorrahaged to death a couple of time from biting my tongue!

Keep saying what you want here. This is the place for it. And individuals may well disagree but that's life. People often disagree with me, even though I'm almost always right....... Well, if they just agreed with me, life would be easier for all of us!!

Take care & keep venting.

Joanne

 

[Chris]

Hip Protectors & Bed Rails

Hello Frederick
On a very practical note - in the meantime before you are able to consider a new bed - have you thought about asking your wife about wearing Hip Protectors? These are a type of padded pants (with special inserts at the sides over the hips) so that if you fall they can protect the hip against fracture & are very successful - if they are worn that is - some people get on better with wearing them than others - wonderful things I reckon having seen my Mum go through 2 hip ops following falls (before these were invented) . ! dont know why NHS doesnt advertise them more - a hip operation costs £12 k let alone the pain etc etc and sadly the truth is many people never recover fully.

These hip protectors are well proven - lots of research studies done. there are different styles for men and women & some are better for 24 hour wear - again an OT or local helpline maybe give you more info. or local shops that deal with mobility & aids & things. May have to send away for them - but if you can say to local SS that your wife is at risk of falling - they may (good Grief what am I saying - they SHOULD !!) be able to give advice even if wont pay for them.

in our area there is a pilot scheme going on to see if people who have dementia get on OK with them - & to show it will be cost effectvie for local Health Authority to fund for others - isnt it sad state of affairs when it all comes down to money.
BED RAILS
In hospitals & care homes there is a big debate about side rails on beds as some people who are confused etc have tried to climb over them & injured themselves even more that way - then of course the care home or hospital are responsible. In care homes the resident or their representative has to sign a form to say they approve of the rails. at times of course it is the least of the two risks - it all depends on how the person is & if they would try to get out of bed - whatever the obstacles. I think they are probably only used when someone is unable to get out of bed unaided but may roll over & fall out. Only you wil know best.

Do you know if Anna fell out of bed or fell after she was out of bed. If its the latter that is the problem you can get a pressure mat that would alert you when Anna gets out of bed and steps on the mat.

Sorry to bombard you !!!

Hope you are OK.

Chris

 

[Chris]

Everything is 'so heavy'

Hi Joanne

Your message took me back - my Mum used to say how heavy everything was - drove me mad - but would give anything now for her to be here and saying whateve she wanted to .

What a difference time makes - rounds off all the rough edges !! Mum used to say - or as you say , complain , about everything being 'heavy' - every time she put her coat on "Oooh its so heavy" - even a table fork !!!! Worrying thing is I find myself - nearly - saying the same thing now - I bite my tongue though !! HELP !!!!!!

 

[Lulu]

Thank you Joanne. You know what. I think that the holiday has brought everything to a head. Dad became ill, dad died, mum was diagnosed, I have never stopped to think about it all. I have yet to come to terms with things, yet circumstances make me move forever onward, never a minute. I think of today's problems, and feel overwhelmed by the future, yet still need time to think about what has happened. Norman, is SO right. Day by day, but I just need a few moments ........ which never seem to be there.
Yes, for Mum also, things are never 'quite right'. She uses the same old stock answers which she's always used, never mind if they fit the occasion or not. I both love her and hate her for it, but you've made me smile. Sometimes, it's so funny, the stories people tell of what is hapening to them, and tragic at the same time of course. Thanks everybody.

 

[jules]

Hi Joanne,

I was just reading your post and the comment that your mother is very sensitive to the heat, cold etc. really made me realise that this must be part of the illness because that's one of the things that happens to my mum. Whatever you do she is not happy sometimes, you can wrap her up really warm to go out, even on a lovely day,and she says shes cold but then in no time she's hot and taking things off! This happens in the house as well especially when settling her down at night. This we have found very strange.

 

[Brucie]

I can't help but think that the comments 'hot' 'cold' 'windy' etc don't probably really mean what they seem.

I think that, with the knowledge inside themselves, probably desperately trying to hide it, that somehow they are losing their mental faculties, they are desperate to show they can still think, sense, talk, etc.

So, when an occasion presents itself, they make a comment, just to show they are still there, that they still count. Like when we are with a stranger for the first time, we say inconsequential things. We might even say "its cold tonight" when it is only just a little chilly. Just to make a link.

That's what they are doing, making a link, and each person may find a different way to link, to get attention.

With Jan, it was special to her. In all the years I had known her, she had never sworn at all. So, to link with me, she once used a four letter word and, coming from her, it was more horrible than a lifetime of obscenities from someone more used to using them.

Then she said, as I stood there, dumbfounded..... "there! that got your attention"

and that was the only time she ever swore.

Communication becomes ever more a challenge.

Today when I arrived to be with her, Jan started making what sounded like growling noises - her voice has dropped a couple of octaves the past few years - and so I tried really hard to understand what she was saying. It was quite simple really, when I got past the form of delivery - she was saying "lovely".