Don't know what to do now...

[Dina]

hi everyone

i care for my mum who is 76 and has dementia. she was diagnosed about 1 year ago, but has had it for at least 5 years.

my mum refused to admit that she has any problems caring for herself, although she does accept that she has a "memory problem". when i managed to get her to see the consultant, she refused to have the ct scan and would not take any medication.

i have managed to get a carer from crossroads in for an hour twice a week while i am at work and a cleaner in for an hour. both these she resents and tells me she does not need.

she was offered a place at a day centre but refuses to go. we spend all day and everyday together (not weekends), i only work 2 mornings a week and that is becoming harder. the time we spend together is becoming more and more difficult, we have nothing to say to each other, partly because we do nothing else. she would so benefit from the stimulation of the day centre. i am beginning to become very resentful that she decides what i can and can't do (by deciding not to go to the day centre or have other people in).

what do i do now? she has not been told that she has dementia, she would not take it well i believe. it is no use explaining that her memory problem means she needs more help 'cos whatever you tell her, she forgets.

any ideas would be great - i know that compared to many on this site, not only do my problems seem minor but is seem to be uncaring - but i just feel it's time i put my needs and my childrens and husbands, a little higher up the ladder, i'm not suggesting anything that would be harmful to my mum, just the oppostite.

 

[Splat88]

Your story is so like ours, my ma in law also puts it all down to age and bad memory, and we too have skirted round the subject of dementia for the same reasons. It's very hard when you are constantly told "you'll get old one day!" as an answer for anything she doesn't want to do.

Though she lives with us now, I find it very difficult to keep her occupied, she says she's perfectly happy to just sit in her chair reading her paper and doing the crossword. I know that she needs to find things to do to keep her mind active, but what else? Lately, she has taken to wandering all over the house and outside, and I do worry that she might take it into her head to wander off down the road, though we aren't at that stage yet. She doesn't venture upstairs because she's lived in a bungalow all her life, and doesn't think about us having an upstairs, though it shows how logic disappears, as she knows hers is the only bedroom on the ground floor, and we have three sons and ourselves also at home! It never ceases to amaze me how logic is affected, too.

I have tried trying to get her involved in helping around the house, but she sees housework etc as my job, as according to her memory she is only visiting and hasn't been here for longer than 2 weeks ( she moved in 2 years ago)

Anyone who can suggest anything would get my gratitude, as I feel I'm not doing enough. Don't suggest day centres, as like your mum, she doesn't see the point in those. She seems to have lost interest in most things, except watching telly and reading. Or maybe, she just can't cope with anything else, she certainly can't read a book as she can't remember the plot once she stops reading. That must be so frustrating for her!

 

[rummy]

I also tried to get my Mom to go to a senior day out for people with dimentia, even went with her to hear a piano player but she wouldn't stay. I am pretty certain it is because she sees alot of old people there and doesn't see herself as old. She is resisting aging and doesn't want to be around it. I take her to church on Sundays so she can be exposed to people and some conversation. That helps but she forgets day to day what she does so it is short lived. Perhaps you could get some respite help to come in and visit with her during the week. I know there are volunteers in our area that do that.

Take care of yourself and know we're all in the same boat.

Debbie (Rummy)

 

[Dina]

Yes, my mum says that "those places" are full of old people - she must think she is about 12 I think, because she is often incredulous to discover she has children (4) let alone grandchildren (5).

A question that is puzzling me...I am not allowed to, nor would I leave my 10 yr old son on his own in the house...however I am allowed and do leave my 76 yr old mother with dementia on her own. If there was a fire, my son would know to leave the house and get help - my mother wouldn't...if there was a problem, my son would know who and how to phone for some help - my mother wouldn't...and my son knows what not to touch because of the risk of fire or accidents - my mother doesn't. It's strange isn't it. At what stage is it not acceptable to leave an extremely ill elderly parent on their own?

 

[Brucie]

Yes, strange, isn't it?

I guess that children are officially 'minors' and as such as under care of parents but also of society.

There is no category of 'seniors' that is the same, and to take their right of self determination in how they live away is a difficult thing to legislate for, even if they are clearly unable to cope on their own.

Children have a more vocal public minority looking after their needs than do people with dementia. Also, children will grow up and become adults. People with dementia will only progress in their illness.

Sad.

 

[rummy]

That is sooooo true! My Mom has set off the fire alarm three times, over cooking Oreo cookies in the microwave. ( I know, why would she need to cook already cooked Oreo's!)
The MD told us never to leave Mom alone for her own safety. She is also advanced stage, 76 years old but has my step Dad to watch after her 24/7. I go over every day or she comes to my house.
We really are between a rock and a hard place , trying to care for independent old dementia folks that act like they're two!

 

[Sandy]

Hi Dina,

If there was a fire, my son would know to leave the house and get help - my mother wouldn't...if there was a problem, my son would know who and how to phone for some help - my mother wouldn't

We had similar concerns about my father-in-law who is elderly (84) and has AD. My mother-in-law (80) is his main carer. Whilst she has a carer coming once a week to give her a chance to do the shopping, she does sometimes pop out to the shops or a neighbour's at other times, leaving my father-in-law alone for 15 minutes.

Their social worker suggested that they have a helpline installed, which is a council-run service (they live in Essex also - in Colchester) with a "panic button" type device placed next to the telephone. If a person pushes the button they are connected to a control room that is staffed 24 hours a day. For an extra cost, you can give the service a key to the home should it be necessary to send help (otherwise you have to name two keyholders who can be counted on to be available).

The details of the Colchester service is here:

http://www.colchester.gov.uk/living.asp?sec_id=430

I think many councils offer similar services.

Does your mother have a social worker? Technically, I think it would be social services that has the responsibility to determine when vulnerable adults are no longer safe to be left completely to their own devices in the community. But even then, it is difficult for them to provide services to people who do not feel that they need or want them.

Going by what others have posted on the topic of day centres (such as Lulu most recently), even if a person with AD objects to the concept of a day centre - depending on their personality and where they are in the AD spectrum - they may actually go along with an outing to a "lunch club".

This early/early-middle stage of AD can be hard for everyone as the person with AD has enough awareness of their diminished abilities to feel quite vulnerable and resist any changes. I recently stumbled across this online article by a psychologist that summarized it really well:

The denial of memory and cognitive difficulties in early dementia is often associated with the fear of the possibility of being placed in a new, unfamiliar environment such as a nursing home. Memory is an integral factor in the learning of new tasks and acquisition of new skills. Patients who still exhibit some awareness and insight into their deteriorating cognitive skills often panic at the thought of failing at such basic tasks as locating the new silverware drawer. Their fear of disorientation and loss of control are often great but not clearly voiced to their family members. It is easy for others to interpret their denial, avoidance, and resistance to change as stubbornness and negativism, rather than as their attempts at preserving some sense of competency and self-esteem. Dementia (or other brain disorders such as head injury or stroke) may also involve a component of organic unawareness, in which the individual is not capable of observing and judging his or her own performance due to impairment in brain systems which mediate these abilities. What may be interpreted as denial for emotional reasons may, in fact, be lack of awareness for cognitive reasons.

The full article can be found here:

http://www.rsmpsychology.com/memdisorder.htm

Take care,

Sandy

 

[Dina]

Thanks for the information Sandy.

I don't want to sound negative....but...I don't think my mum would use such an alarm, partly because she wouldn't realise when to use it and partly because she wouldn't want to bother anyone. It is an good idea though and I will discuss it with the rest of the family and see what they think. She lives on her own (only 4 doors down the road from me) so it is becoming a worry especially at night.

The social worker feels that my mum would be "suitable" but not ready for residential care in that she is unable to care for herself adequately. However we both recognise that we services in the home she would be able to function fairly well at home for some time to come.

However, my mum is resistant to all help. She was offered the day centre as a lunch club, and taken there for a visit on the pretence of going for a cup of tea, but when she was arrived there she immediately demanded to be taken home and became angry and verbally aggressive. I thinks she thought it was a care home.

She has a carer from Crossroad for an hour twice a week while I'm at work and a cleaner from Help the Aged for 1 hour a week. Both of these she resents and tells me she does not need nor want. I need to increase the hours she has carers. partly to give me more time and partly because I cannot offer her mental stimulation anymore, but with her constant refusal I'm at a dead end.

One of my biggest concerns on a purely selfish basis is that I am becoming so resentful of the lack of cooperation that is is destroying any feelings I once had for my mum and also affecting my ability to care for her in a sensitive way. I resent the affect she has on my family and my life when she will not (probably cannot) meet us part of the way.

I read the article Sandy and I do understand that she can't help it and is probably very scared and confused, but I'm also getting to the point that I can't help it either. I also got from the article something which I have realised myself this week and that is that I need to get help for me on how to deal and cope with rather than help for my mum. Help for her seems hopeless, she just rejects it and I feel in a no win situation, but help for me to come to terms with my life and how to react to her behaviour might actually be of help.

Thanks again for reading and responding to this. I know many people are in worse situations than me - my mum for one.

 

[zed]

Hi Dina

You are totally right to put the needs of you and your family higher up. You need to look after yourself too. In my opinion, maybe it is time to be a bit ruthless, and take your mother to the day centre even if she doesn't want to go.

I arranged for a visitor come from a local charity once a week. Mum totally refused. So I said to her, that I need help, and really the visitor will be helping me, as the visitor can take some pressure off me. I got tough with Mum and said she had to allow the visitor to come, and if she didn't then I would not help her anymore (I didn't really mean that!).

In the end we came to a compromise, Mum agreed to try it out, and now she enjoys the visitor coming.

I feel uncaring too sometimes. I live on the other side of London from my Mum, and sometimes I think I should move nearer to her. But that would not be fair on my partner, as he would have a very long journey every day. And I would have a very long journey to work. We love living where we live, we are settled here. So even though I know it would be good for Mum if we lived nearer, I am not prepared to move.

 

[Norman]

Dear Dina
my wife is still in denial after 7 years.
I had all the problems that you described,in the end,as Zed said I put my foot down.
I said to Peg "think about me a little I cannot go out and leave you alone,please be reasonable."
I then got Crossroads to provide 2 sitters (6 hours) in a week and it was accepted.
Peg still insists there is nothing wrong,but accepts the sitters when they arrive,they go out together some weeks and she enjoys their company.
I sat for 2 hours today with a SW doing a reassessment,I think I have won some more funded hours,which will make life so much easier for me.
This has turned into a bit of a ramble,but Dina I am sure the only way is to take a strong line in these situation.
I found once the sitters were installed,they were accepted and the opositionn was forgotten.
Hope this helps
Norman

 

[connie]

Dear Dina, I agree with all Norman says. Sometimes you have to be 'cruel' to be kind. As a carer you have to put as much in place for youself as you can. Not to be selfish, but just to enable yourself to continue. It is sometimes surprising how much can be achieved by appealing in a different way. Take care, Connie