Dodgy hand

[Amy]

Advice please.
Mum is in advanced stages of dementia, mainly vascular we think. She does seem to suffer weakness in her left side and her left leg has a tremor. Her left hand tends to be scrunched up, and now we have noticed that her wrist is dropping. When I try to straighten her fingers it obviously causes her pain. I am worried that this means that she is going to be in pain whenever she is dressed/ undressed. Is this happening with anyone else? I don't know if it is to do with deterioration due to the dementia, or arthritis. I have pointed it out to the nursing home, and asked them to massage the hand as it does seem to help. I think I may ask them to get the doctor to have a look; as I am on half term this week I may be able to be there to try and talk to him myself.
On another tack, I'm having difficulty accepting mum being in the Nursing Home. It is OK on days when I don't see her, but when I have been to visit I feel so awful coming away. Mum does not appear to be perturbed by it, but she is more isolated than when she was at home. I've been this afternoon and tonight I cannot sleep because she is in my head. I seem to come to this same place every weekend. Day by day eh Norman? And today is another day, and later on I can go and be with her,and make her smile, and for a couple of hours know that she is being loved and is not alone.
Hopefully I am tired enough now to sleep, if not there might be another message later! Thanks for listening. Night night.
Amy

 

[Brucie]

Mum is in advanced stages of dementia, mainly vascular we think. She does seem to suffer weakness in her left side and her left leg has a tremor. Her left hand tends to be scrunched up, and now we have noticed that her wrist is dropping. When I try to straighten her fingers it obviously causes her pain. I am worried that this means that she is going to be in pain whenever she is dressed/ undressed. Is this happening with anyone else?

Jan is the same, right hand side, sometimes she has tremors.

Seems to happen to many, and with Jan her upper back and neck are also stiff, so if I try to sit her up it appears painful. I'm assuming it is part of the development of the dementia. I get around the apparent pain by not trying to straighten her fingers/back.

Yes there are problems when they dress/undress her. I had to buy a size 16 shirt for her last week, when she is size 10 nowadays. Too big when on, but causing less distress when dressing.

It's all a bit of a bummer really. Just have to try to do the best.

 

[Amy]

Hiya Bruce,

It's all a bit of a bummer really.

Such eloquence! Such understatement!

It sounds as though mum and Jan are at a similar stage. The OT told us that the curling is a reversion to the foetal position. You seem so accepting of this disease, and all that goes with it, and you appear to work with it. Maybe I need to learn from that, accept where we are rather than keep wishing things were different. All I'm doing is hurting myself.

So on that note, I am going to go and see mum now; if it is bath time I will be able to help with that. I've promised one of the other residents I will take a jigsaw in and do it with her this afternoon (she doesn't have any visitors herself, and I knew her when I was in my teens.) Then tonight I am going to a Wedding reception at a posh place near us with some friends from work.

Thanks Brucie.
BFN
Amy

 

[pammy14]

Hi

My sister also has weakness on the right side both arm and leg. her hand also clenches and holds on very firmly to anything and you have a job to unclench it for her but she never seems to be in pain. Its like a stroke has affected that side. The arm seems to do what it likes and doesnt seem to have any feeling. It is difficult helping her dress and of course eating etc is very difficult.

I think one of the TIAs she must have had has taken this arm and leg and also her speech. Possibly with each one it takes something else. Although we never see her have a stroke I have found her on the floor in the bedroom in the morning and think perhaps she has had another.

 

[Robert]

Hello Amy,

My wife has the same problem with her left hand, I think mainly due to arthritis and very painful, her right hand seems ok at present. She has been in an EMI care home for just over a year now.

Being concerned at the length of time my wife spent in an armchair, since she can not walk or stand, I tried to get physiotherapy assistance through the NHS without success. Having now taken my wife to see a phyisio privately for general joint mobility exercises, I asked about the curled fingers and an assosiated aroma.

The physio suggested using wet wipes to clean and freshen between fingers and palm (normal washing and drying is very painful) followed by very gentle massage with hand cream on the palm. In my wife's case she also had an indentation from the nail of her little finger, although I always trimmed the nail as short as I could.

I do the cleaning and massage to both of my wife's hands every day now, plus I get her to hold a roll of crepe bandage about 3/4 inch dia (20mm) afterwards in her left (bad) hand. This prevents the fingers from being tightly clenched and allows some air to circulate around her fingers. There is a definite improvement and of course she sometimes lets go of the bandage roll, which I gently replace. I have asked the carers to help replace the bandage roll as well.

Hope this might be of help.

Robert

 

[barraf]

Dear Amy

Margaret has the same sort of symptoms, curled hand and dragging her foot, both on the right side.

Our GP says it is the result of the stroke, it has improved slightly over the interveinng weeks, but is still there to some degree.

She also gets tremors in both hands but not permanently, they come and go, when they are at their height she cannot hold a drink without spilling it.

Like some of the others she grips things very firmly with her right hand, making it very difficult to dress and undress her or dry her after her bath.

There doesn't appear to be any pain associated with it though, for which I am thankful.

It seems it is just one of the problens you can encouter when dealing with AD.

Cheers Barraf

 

[Brucie]

Hi Amy

You seem so accepting of this disease, and all that goes with it, and you appear to work with it.

You put it very well. Yes, to come to terms with Jan as she now is, and as she will become in the future, I guess I have had to become accepting.

I can't fight it - no-one can to any effect. We can seek to alleviate some of the worst things, but in the end, we just hang on to its coat tails, close our eyes, and hope we won't be shaken off on a sudden bend.

 

[Amy]

Thankyou Pam, Robert and Barraf, I've found your postings useful. I think because the medical services see these things regularly, they don't bother about them. I too had noticed an aroma Robert; because mum's fingers are so tightly clenched against each other, they are becoming very red and I did say to the nurse that I was concerned that they were becoming sore. Mum also digs her nails into her palm so I too am a manicurist! I will get some baby wipes tomorrow and take some handcream. Robert do you mind me asking what other exercises the physio recommended? My mum only walks with assistance from two people, so movement is very limited; I too am concerned about her just sitting.

Bruce I was very proud of myself yesterday. I visited mum, helped with bathing her; gave her a nice piece of cheesecake and then she went to sleep! So I popped down to dad's for 45 minutes to help him choose a new carpet, and then we both went back to give mum her tea. Driving home I kept in my head that I had done all I could; mum and I had enjoyed our time together, and I came in, got changed and went out. I think it's the first visit that I haven't ended up in tears, so I feel very pleased with myself. Sorry if this sounds really daft! The care assistant who was with me whilst I bathed mum said she thought how nice it was when family came and helped; I said that I didn't think mum knew me from anyone else, and she said that she felt dementia patients were often calmer and happier when relatives had been, even if apparently they didn't know them.

How does that prayer go?
Accept the things we cannot change, change the things we can, and have the wisdom to know the difference.

Sorry for rabbiting on. I'm in the house with four gas fitters - floorboards are up in every room, We have three chairs that we can sit on. I've sent the kids round to friends, and my husband has taken the dog out. Chaos reigns!

BFN
Amy

 

[Bets]

Hallo Amy,

I think the full version goes something like: "Give me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference."

Bets

 

[Robert]

Hello Amy,

So pleased to hear that you had a good day yesterday. There seem to be so many days where despite our best efforts, things just do not work out and we are left feeling despondent, so that when a good day does come along it gives a real lift.

I contacted the physio in the hope that with her help, my wife might be able to stand and weight bear eventually, so I'm delighted to pass on the exercise details advised so far. All the exercises fall into the category of maintaining joint mobility and are gentle to the point of avoiding pain or discomfort. I bring my wife home every two weeks for an hour long session with the physio, the exercises being conducted with my wife sitting in her wheechair. Sadly she does not recognize home anymore. I help my wife with the exercises at the care home as well whenever she is willing and co-operative, usually around 3/4 times a week.

Leg Exercises Leg straightening and bending each leg x 3. Knee lifting x 3 each leg. "Walking" (alternate knee lifts) x 3 both legs (=6). Toe tapping each foot, then alternately. My wife loves music (60's pops) or any music with a beat is a great help.

Hand and Arm movements Gentle finger straightening and holding position, if possible fingers extended with palm down on knee, practise patting (in time to music). Practise turning palm up and palm down. Practise picking up eg crisps or grapes etc.

Arm Movements Guided and assisted movements, forwards and up as high as you can go, out to side, stretch and hold. Use goals "touch my shoulder, touch your chin/my chin".

Encourage forward bending using hands on armrests or reaching forwards to touch something (different heights). Sitting upright away from chair back.

The physio has lent us a pedaling device which is ideal since it covers most of the leg exercises. At present I have to assist in turing the pedals, but I hope in time my wife may get the hang of it herself.

Obviously trying to make it seem like fun helps matters along, I pull funny faces, hold my wife's hands ( if she'll let me) and jig in time to the music.

Massaging the palms is important, since with lack of use movement becomes restricted and it is possible to feel a knotted effect in the centre of the palm, I'm not sure if this is ligaments or tendons being affected. I find the crepe bandage very good (as mentioned yesterday) since it is possible to start with a small diameter roll and then if possible increase the dia gradually.

Sorry this is a bit lengthy, but hope some/all of it may be a help

Best wishes,

Robert.