Somebody else's glasses

[hendy]

Somebody Else's Toiletries

To anyone reading
Dad still has his own glasses on today. Hallelujah!
I am going to have to make an inventory of somekind or start a new thread entitled 'somebody else's toiletries' I didn't check his toilet bag last time and 'lo and behold' it had done a disappearing act! Instead i found an economy-sized bottle of somebody else's Tea Tree oil shampoo. Searching further into his wardrobe I uncovered two pairs of somebody else's slippers and also a hair brush. I also noticed that his new pair of trendy brown-leatherette-trainers-with-two-velcro-straps had also gone missing. These were bought under emergency conditions prior to a visit to the opticicans when I realised his brown clarks shoes had disappeared under mysterious circumstances at his NH.
Pause now for breath.
Managed to discuss matters with nursing assistant, who very kindly and patiently searched lockers etc looking for missing items. Having given description of said Toiltries bag (black/brown - brass zip m and S design) it duly turned up in another gents locker. Unzipped bag and found most items in, except missing from said bag razor and spare blades( Asda triple blade) and nail brush.(white/plastic)
Brown-leatherette-trainers-with-two-velcro-straps remain on missing list.
I also brought with me Dad's clean laundry which included two pairs of somebody else's pyjama's freshly laundered and ready to wear.
Got back home and received call from Dad's new SW and I'm sorry to let the side down, but he didn't get a right 'blasting' straight away. I think that's something to save for later
thats all for now!
hendy
p.s. does any one else cry in the car? It seems to be the only place where I can do it without upsetting anybody

 

[hendy]

gigi
Isn't there something called an Elder Abuse Enquiry team?? It seems a bit extreme, but I will try to find out more.
regards
hendy

 

[hendy]

Brave Dad

Following yesterday's visit. It was difficult to desribe how it went. Dad wasn't depressed , but he was angry. He was bad tempered with patients, staff and me. 'I know you're feeling mad, but I still love you' He is drooling now, which is horrible. Its nothing compared to what this disease has done to the rest of him. But it's a classic of its worse for everybody else than it is for my dad. He wouldn't let anybody wipe his chin. His anger and confusion has made him difficult to nurse at times. I think his anger is totally justified. Unfortunately he can't measure it or direct it appropriately. Theres no doubt about it my dad's a fighter and a survivor, against all the odds. My brave Dad. I think we're in this for the long haul and I'll be fighting his corner all the way.

Talking of which I spoke to Dad's new SW for the first time. I let him say his bit first.(Yeh yeh yeh here we go again).
He explained he would be taking part in the assessment prior to Dad going to a new Nursing Home. I replied, how would it be possible to do an assessment when investigations( of various kinds) were still taking place and the consultant himself was considering a new diagnosis. He is presenting a different picture now that he's not on meds. My Dad's not going anywhere until we know exactly what his nursing needs are and likely to be in the future. So an asssessment is premature.

I asked what was happening with his last home. The NH wont accept Dad back anymore because of his behaviour. Oh really, thats interesting. Have the NH aknowledged the fact that his behaviour caused problems because basic nursing needs were not met.i.e. Dad was chronically constipated and when it was treated in hospital he settled. When his oral hygiene was attended to he became more comfortable.(according to hospital staff) So I would not want Dad to go back there if it was the last NH on earth. In the light of Dads experience, do SS need to investigate poor level of nursing care because it will be affecting other patients too...?
SW quickly got off phone...
thats all for now
hendy

 

[Carolynlott]

Hello Hendy,
When I read your posts it is like reading my own thoughts. I am on my own coping with my Dad too. I never know how he is going to be when I visit - it varies between a sort of drousy acceptance of his fate, and agitation and trying to escape. He is on two psychotic drugs otherwise the home wouldn't be able to cope with him. I dread weekends because I have to go and see him and I hate it: he doesn't know who I am anyway - other than possibly someone remoteley, vaguely familiar - but I suppose that's something.

His belongings also go missing - he presently has no shoes. I have found women's clothing in his room. Last week he was wearing someone else's socks - why on earth? He went into the home with about 20 pairs, and I have bought him another 10, and sewn his name on every one. He has lost one pair of glasses and I have replaced them. I try not to think of what is going on in his mind but hope he doesn't realise what he's going through. When he comes into my mind during the week I try to push him out. Seeing him wearing 'nappies' is almost too much to bear.

Meanwhile my Mum has shut him out of her mind totally - she is in early stages AD. She doesn't visit - probably just as well, I don't know what it would do to him or her. She has problems of her own and there is no way she could cope with his as well. The last time she saw him was at his most aggressive - she just couldn't comprehend what was happening. She said "What's wrong with him" and I stupidly said "He's got Alzheimer's" - I think she had expected him to be just the same as when he went away and was really asking why he had changed. She has never even said goodbye to him.

Other people on this site seem so positive and good with their relatives - I just feel desperation.

 

[Carolynlott]

PS,
I cry in the car.
C

 

[Grannie G]

Dear Carolyn,

Please don`t put yourself down or compare yourself to others. You have more than your share with both parents in need of so much support.

I know how shocking and upsetting it is to see what seems like neglect. I had a similar experience with my mother when she was in a home.

But when I found other people`s photographs, ornaments and clothes in her room, I realized it wasn`t only lack of staff care that was to blame, my mother was as guilty as any of taking as her own, anything she found pleasing.

So after the stock of my mother`s own handbags, ornaments and family photos had been depleted I just concentrated on the most important things--her teeth and her glasses.

This might be very difficult for some people to accept, and I hope I haven`t offended you, but my mother had no idea the clothes she wore weren`t hers, and as long as they were clean, in decent condition and comfortable, it was only upsetting to me.

So I continued to buy the most basic clothes for her, didn`t sew name tapes but wrote her name in indelible marker and hoped for the best.

It might just make life a bit easier for you.

Love xx

 

[gigi]

Hello Carolynlott,

Other people on this site seem so positive and good with their relatives - I just feel desperation.

My heart goes out to you..you've got a double whammy..

The feeling of desperation I do understand..faced with what seems to be hopelessness..and the crying in the car..

You are doing the best you can..supporting both parents in their different stages of AD..

Please try not to compare yourself with others here..rather see yourself as a caring and valued person, which you are..and remember no two situations are the same.

TP is here for you as much as anyone..it's good to know we're not alone..

Love Gigi x

 

[Carolynlott]

Thanks for being so kind. I just feel so indequate.

I know my Dad hasn't a clue what he's wearing, and as long as he's comfortable it's OK. He isn't even sure of his own room - he will happily walk into anyone's, and last week I was sure he didn't realise the things in the room were his. I don't blame anyone for him losing stuff - it must be a nightmare trying to keep track of what's whose even though it's all supposed to be named. I did put his name on his walking stick but he peeled it off. I suspect he sometimes thinks the other residents are my Mum.

What is really scary is the deterioration between 3 months ago when he went in and now - in both parents. Or maybe I am just more aware now. Or both.

One thing I meant to ask - my Dad is still taking Rimanyl (Galantamine) which he was prescribed originally two years ago. I just don't see the point now. Why slow down his illness when his quality of life is so poor? I would have thought - with such drugs often being rationed to those they can supposedly benefit most - the powers that be would have stopped giving it to him by now? Just a thought.
C

 

[germain]

Hello,

Would just like to second Sylvia's points.

The amount of washing in a NH can be huge ! - and the amount of clothes without labels - ditto - I used to really feel for the girls trying to sort it out - especially as some residents would claim things as their own when they patently were not.


Mum lost her glasses several times but it was usually her who took them off and left them somewhere - she didn't like to have them on when she wanted a doze in the chair. We eventually got a neck string for them which was a little harder to take off but this didn't stop her ! She was also nearly blind without them.


Now to teeth - well - it gets a bit hysterical here ! Mum went into the CH with 2 sets of false teeth and managed to take them out regularly and leave them around. We laughed pre Xmas once when helping the girls to search but yes they WERE found on the Xmas tree ! Otherplaces were in her coffee, under the plastic date displays, up her sleeve and in the fruit bowl. Eventually she ended up with her new tops and old bottoms - the others disappeared off the face of the earth BUT the final straw was when we caught her lending them to another resident whose teeth "wouldn't chew her meat" - it was a genuine "well, here try mine" situation. Thats the point when we just about gave up !

Mum's gone now so we've told the CH that if they find her missing odd set of teeth they are to be gilded as a new Xmas dec. for next year.

Gosh - I think what I'm really trying to say in my very very long winded way is that it isn't always neglect - it happens in the very best of CHs- and we think that our Mums was superb !

All the best

germain

 

[Grannie G]

I just feel so indequate.
C

Why?

You obviously love your parents, you are concerned about the quality of their care, you see them regularly and you cry for them.

You cannot cure dementia, it is not your fault they have it. If there was anything more you could do, it would have been done by now.

As far as the Reminyl is concerned, you must discuss this with your father`s doctor, the doctor who prescribes it. Book an appointment and have a good chat.

Take care of yourself

Love xx

 

[Carolynlott]

Good idea. When my Dad went into his home he was assigned to a new GP practice that covered the home. I haven't a clue who his GP is and he has apparently also been assigned a new psychiatrist as he has moved 'catchment areas'. (NB Wonder why someone who is under a psychiatrist is only deeemed to need social care? Hmmm.) Anyway I at least know the name of the new surgery so I'll get in touch. Not that the last GP was any help - I had to push and push just to get anyone to take any notice. Shortly before the final crisis when Dad went to the home I saw a GP at his surgery to discuss his incontinence. I cried the whole time - for help really - but just got what was like a prepared speech which said he couldn't discuss my Dad's case (even with me!) because of patient confidentiality. I ask you.
C

 

[hendy]

Hi Carolynlott
I've just caught up with your replies. I am so sorry that both of your parents are affected by AD, what a truly horrendous burden to face on your own. Thanks for replying, it is appreciated. Looking after Dads in the later stages of this disease and to face upto their decline is a truly shocking experience, however practical we try to be, it gets harder not easier. I know I have moaned about small things on my thread, thats just me getting annoyed. None of these things are that important in the grand scheme of things and nothing is going to stop the decline. My dad is in 'nappies' too and I try not to let it uspet me but I'm afraid it does. His behaviour is disturbing because it fluctuates so much. In his 'old' life, when he was himself( i don't know how to phrase this...) he was polite, helpful, practical and considerate. But he isn't now. this is the hardest thing of all. Carolyn, there's just too much to come to terms with we can't possibly do it all in one go. Whatever we do will never be enough, the disease wins every time. Please please dont feel inadequate. You care for and love your Dad and Mum and you do what you can. Please keep in touch
take care
hendy

 

[Carolynlott]

Hello Hendy,
Thanks again. I think we have a lot in common. Just visited Dad this afternoon and he was in wandering mode. Not the slightest recognition that he knew me or my husband. He wouldn't sit and talk - he just wandered the corridors trying all the door handles. He said his knees hurt and he looked so tired, but he wouldn't stop. Only once he asked me how the "little ones" were - and then he was gone again. Just rambling incoherently really.

I did coax him into his room eventually - he recognised a belt, a face cloth and his glasses and said he thought they were his, and wandered off with them - taking them.... to wherever it was he was looking for. He's such a tortured soul - I wish he could find some peace.

I think maybe 5 pm isn't a good time to see him - he's probably better in the mornings. I feel we are building up to the next crisis - be it a fall, infection, whatever.

C

 

[hendy]

Hi carolyn
Is it ever going to be a good time to visit? I try to have no expectations when I go. If we get a good moment then its a bonus. Its so sad, I am trying not to get depressed about it because then the disease claims another victim. I try and look for the positive in everything, but it can be so hard.
My husband has been a fantstic support. We try as much as possible to get out and get a social life so that we're are not consumed by the problems. I find this helps a great deal. We do have to go to some lengths to do this but it can be a real tonic and morale booster. Do you find that you are able to get any 'me' time at all?
take care
hendy

 

[Carolynlott]

Hi Hendy,
Thanks. I work full time - that is one of the things that is getting me through this, and I count that as 'me' time really.

At the moment apart from my Dad's half hour a week (plus an hour travelling time), seeing my Mum a couple of times a week and sorting out all their affairs and paperwork I am doing OK apart from looking after my own family. The problems are going to arise when Mum gets worse and isn't independent any more. There will be a lot of pressure on me to have her living here and I feel so guilty about not wanting that to happen.

I just bought myself a flute and am learning that - one thing this illness has taught me is live for the day, plus I am determined to do everything I can to keep my brain stimulated. Having both parents with AD the obvious reaction is that if there is a genetic element my own prospects aren't great.

Enough of me - hope you are coping OK too.
C
PS my husband has been great too.

 

[hendy]

Hi Carolyn
Just got in from a night out. (I was driving so feel i can safely post even if its late)
Please dont feel guilty especially about care of your mum. You can only do what you can do. If you are working full-time and looking after your own family there is going to be a limit to what you can do. I'm sorry I dont mean to sound bossy, but I think you are being too hard on yourself. Its so difficult to know what to do for the best at times. Sometimes I try to think what my dad would expect me to do in this situation and I find that helps because he was so pragmatic and full of common sense. He would say put your own family first. Its easier said than done, but I find it comforting.
I also worry about the hereditary aspect of the illness(es), but I try not to dwell on it. I think a consultant would be the best to advise about this one, because not all dementia types are 'in the family'
Carolyn you'll never believe this, but I'm a flute player(flute teacher,classical& jazz musician). I was in a gig tonight. So if I can give you any tips on your playing i'll do my best. Even if I say so myself, one of the best flute(and saxophone) teachers in my area!! So there's another coincidence but a nice one!!
Do you have children? mine are two boys 5 and 10 and hubby Ken.
take care
hendy
ps music is my 'medicine' too always has been
pps i have started singing lessons and making fair progress!

 

[hendy]

Hi to anyone reading

Preparing to visit Dad today - have no expectations. James is coming with me and we are going to stop off at Marks to get cream cakes and treats( and socks!!)Am still considering Janjan's marvellous idea of taking in a travel kettle and brewing up(fresh coffee) to go with cream cakes. Not quite sure if I could get away with it at present - health and safety and all that.
Am waiting for Iron on stickers to arrive by post as Dad has new clothes. I am also armed with a Permanent pen (which with white labels and tacky back plastic is a deadly combination- any class teachers out there will know what I mean!)I have bought new toiletires and will start labellling with a vengeance. Enough of the procrastination...
catch you later
hendy

 

[CYN]

labels

When my husband was in his first home(three in all) when they packed his case upon leaving i checked it out, there were several items missing and some that were not his.I left the home with the list of missing articles as requested by me. Several weeks later when they could not find the missing clothes i told them i was claiming compensation from their insurance and i did get a payment.

This home was newly opened and very expensive and lacked proper care.Husband came out with bed sore after 5 weeks.

Cynthia x x

 

[Margarita]

You sound so on the ball with your father care , its so lovely to read .

I have been chatching up with this thread

Talking of which I spoke to Dad's new SW for the first time. I let him say his bit first.(Yeh yeh yeh here we go again).
He explained he would be taking part in the assessment prior to Dad going to a new Nursing Home. I replied, how would it be possible to do an assessment when investigations( of various kinds) were still taking place and the consultant himself was considering a new diagnosis. He is presenting a different picture now that he's not on meds. My Dad's not going anywhere until we know exactly what his nursing needs are and likely to be in the future. So an asssessment is premature.

I would like to ask you , should look back on your post , but what was your father 1st diagnosed with ?

As something similar (sp ) happening with my mother (but it my not be similar ) as my mother had a brain scan before being told she had AZ , now with medication staff speculating that she may not have AZ .

so now am going to see a specialist am thinking of asking for another brain scan , but I know it may distress my mother some what more then she already is, so am not sure to do it anyway as what the point as they no more medication that can help her .

( Please, don't take that the wrong way I am just thinking out load referring to my own situation when I say that , not your)

He is presenting a different picture now that he's not on meds.

1 So am wondering what medication your father now on , to make make him change so much that you think that he has not got what they 1st told him as his presenting a different picture now ?

2 was also interesting to read that the consultant himself was considering a new diagnosis. did they do a brain scan in the first place ?

3 Did the consultant not say that it could be because the medication helping him , so that why they a change .

I do hope you don't mind me asking all this .

 

[hendy]

Hello Cynthia
Thank you for your reply. I think you did well to pursue the missing items with the home. I have to tie up some loose ends with Dad's last home, but I'm going to be busy with other issues like whether he received inadequate care etc I might put in a claim if I can find the energy...
How awful that your husband left with bedsores after such a short time. It does beg the question doesn't it Cynthia, if they take so little regard for patients' property, is it a sign of something worse? I know this has been a debate with other members on the forum at some time. We always hope that we are doing the best for our loved ones and these things just add to the burden of guilt. Perhaps other people reading this thread might be able to include their thoughts about things such as bed sores v neglect?
take care
hendy