Mum

[Baldeagle]

Hi

I wondered if anyone has any thoughts about my Mum and how I can improve her quality of life.

Mum is 87 and lives on her own with moderate dementia. Dad passed away four years ago and since then she has managed to live on her own but is extremely isolated, and tends not to leave the house. We have tried to get her to go to the social club at her church, but she has refused consistently. After a war of attrition over the years, I do have carers that go in to see her in the morning to make sure that she has taken her pills - she has a prescription for Alzheimers retardent drugs and her anti-depressants, and they check on her generally every morning.

Despite having to dodge the odd swing of the handbag - she always was a bit firery - , they do persist.

Essentially she is getting away with it but is very lonely, and here she is unfortunately a complete contradiction. Despite her rejection of going places, she gets very upset about the loneliness the day brings - I tend not to ring her in the evening as this is when she seems to be the most upset.

I have tried all the angles regarding the options (homes etc). These end in utterly futile conversations, and I can hear in my head all of her standard robotic responses - 'I'm too John Blunt...I'm not a good mixer...I know all my neighbours...I have so and so upstairs if I need anything...the only way I'm leaving this house is in a box...etc", all in stark contrast to "..i haven't seen a sinner soul for days, so and so never comes in, I wish I was dead".

I am at a loss to see how I can currently improve her quality of life as she flatly refuses to move nearer to us in Kent (she is 3 hours away) where we have a young family, will not go to clubs, or even go out (maybe for fear of getting lost). She has meals on wheels and seems to get away with the rest of her requirements through our internet shopping deliveries.

She is on the radar of social services, and is the right side of the mini-mental test to stay at home - although she has deteriorated a few points on most aspects in the last year.

Any steer, or insight into befriending, or any other strategies would be a God-send.

Rgds,

BaldEagle

 

[Sue J]

Hi Baldeagle

Sorry you have the worries over your Mum. Do you have a local (to your Mum) ALzheimer's Society who may have befrienders or can advise you?

I hope you get something sorted

Best wishes
Sue

 

[sussexsue]

Hi Baldeagle

Horrible situation for you all. Is your mum still fairly healthy (apart from dementia). If so there is probably little you can do, but it is so hard being such a distance.

The trouble with dementia is that happiness seems to be replaced with loneliness. My mum lives with us and it is quite a hectic household. However she is still lonely as it is a world she cannot really be part of. She chooses to sit in her room or in the garden, occasionally putting the TV on or reading (looking at) the paper. But mostly she just stares into space and drifts in and out of sleep all day. Her best interaction is with our dog who is thrilled to have someone happy to throw balls for her all day. Her best times are at Day Care, but that is mostly down to the amazing enthusiastic helpers who interact with them all so well.

I think you are right to avoid phoning in the evenings. It seems to always bring out the very worst and most distress in people with dementia.

Although your mum is refusing to move closer to you does she come over and visit. Maybe if you spent a week with her you might get to see both the good and the bad times during her day.

Just all very sad.

Sue

 

[harvey]

Thi could be our story, we tried everything too but gave up in the end. We felt guilty that she would not accept help of any kind apart from a carer going in twice a week. We too tried to get her to move closer to us, this after living with her for three months. We had to move back home for the sake of our sanity. She initially agreed to sell her house but then ordered us to take it off the market. She too told us constantly that she was lonely at the same time telling us she liked her own company.
We were forever trying to persuade her to accept help or aids to make her life more comfortable but to no avail. She drove everyone away with her spitefulness, in the end she only had the carers and gardener to talk to. With us if we stayed too long the visits always ended in confrontation, she seemed to thrive on arguments!
Following a fall a couple of months ago she was unable to care for herself and was placed in a nursing home. She is happy with the home, the staff and the food. At least we know she is being cared for.
It is a rough road and we seem to have been feeling guilty for one reason or another for the last four years. The stress is now gone but the guilt lingers on. If some one could invent an anti-guilt pill they would make a fortune selling it to carers. You are doing all you can, we put so much into caring for MIL that the SS ordered us to back off as we also had a life. Best wishes and please do not beat yourself up, you have done your best but you will not win until your Mum lets you!
Polly

 

[uselessdaughter]

Hi

I haven't posted here in a while but felt I had to respond to this.

Are you sure your Mum isn't my Dad? We have had exactly the same for the past six years and have got absolutely nowhere. He did agree to a befriending service but then would not let them in because they were boring!! so I'm afraid I cancelled it. I was more than happy to pay £16 an hour if he got something out of it but not when he was not letting them help.

I live 200 miles from Dad and we go for the weekend every four weeks. We can no longer bring him to stay with us as it totally confuses him as to where he is and who we are. He might get used to it eventually if he stayed for longer but my OH draws the line at having Dad live with us permanently and in my heart of heart I know it would not work but the stress and worry of knowing Dad is just sitting there day after day, despite all our efforts, has brought me to the edge of breakdown.

If anyone comes up with a solution I will fall at their feet in gratitude.

Linda

 

[justwilliam]

This sounds like what I will have to face with my own mum in the near future: 200 miles away, lonely but reluctant to mix / get help/ constantly remarking on not having seen a soul, etc. The only thing I'd say is that with my mum, I can phone her and get that sort of negative stuff at one point in the day and then phone her again a couple of hours later and she is much more positive - so I never quite know how 'deep' her own moods are. (Having said that, she used to be always quite positive, so she is deteriorating, I suppose.)

 

[Baldeagle]

Hi Baldeagle

Sorry you have the worries over your Mum. Do you have a local (to your Mum) ALzheimer's Society who may have befrienders or can advise you?

I hope you get something sorted

Best wishes
Sue

Hi,

Tried a few years ago but didn't get any where - they were waiting on whether they could get funding for 'out-reach worker' and never heard back. Will try again in case this has moved on - thanks - good idea.

 

[Baldeagle]

Hi Baldeagle

Horrible situation for you all. Is your mum still fairly healthy (apart from dementia). If so there is probably little you can do, but it is so hard being such a distance.

The trouble with dementia is that happiness seems to be replaced with loneliness. My mum lives with us and it is quite a hectic household. However she is still lonely as it is a world she cannot really be part of. She chooses to sit in her room or in the garden, occasionally putting the TV on or reading (looking at) the paper. But mostly she just stares into space and drifts in and out of sleep all day. Her best interaction is with our dog who is thrilled to have someone happy to throw balls for her all day. Her best times are at Day Care, but that is mostly down to the amazing enthusiastic helpers who interact with them all so well.

I think you are right to avoid phoning in the evenings. It seems to always bring out the very worst and most distress in people with dementia.

Although your mum is refusing to move closer to you does she come over and visit. Maybe if you spent a week with her you might get to see both the good and the bad times during her day.

Just all very sad.

Sue

Hi Sue,

Thanks for your note.

Never really thought about the fact that even with full attention that this is a very lonely disease. Under duress I have coaxed Mum out of the house to come and stay with us over easter / Christmas, but in the last year this has proved just too difficult. For the first time I decided not to coerce her into coming to us for Christmas. I drove to Poole from Kent to collect her, asked her the night before, the morning of and in the afternoon after lunch and got a consistent 'No, you just enjoy your Christmas with your family'. I still drove there, and she still said no.

So it's one way streets to her place unfortunately. When dad first passed, I tried to do once a week, then fortnight then it all got too much with the family and work which is when we we got carers in (huge rows).

She seems to be stuck in a time warp as she thinks Dad hasn't been dead that long and that she isn't ready to leave him (or the house) as she'll have to come back again, and that would be too difficult. The boys are 9 and 7 and I took the decision that for one Christmas that they'd have the undivided attention of their Mum and Dad (and would be spared the 'I wish I was dead' comments, as well as the constant reminders of where Nan lives, pictures of her house....and then the same again five minutes later....plus a row if she thinks she's not being included in a conversation....or left for any longer than five minutes in the living room while we try too heave a big turkey into the oven...prompty followed by intermittent 5 minute requests of 'have I made a will' and 'what does it say'......all finished off with a passing ' I'm never coming her again'...all emotional knives in the heart blissfully forgotten by Mum in the morning.

She is actually in reasonable shape - she used to carry a bit of weight, but the Where's My Purse weight loss system seems to be keeping her fairly trim, albleit she's a bit dizzy on occasion.

Maybe a few days to understand the routine a bit more would be good, especially if I can be there to get a few befrienders in the frame.

Rgds,

Baldeagle

 

[sussexsue]

Hi

Sounds like a good plan. I agree that your young boys should be your priority - precious years that are soon gone.

It does sound that in her own way your mum is surviving and probably not much you can do at the moment. Before mum came to live with us she has settled on the standard dementia diet of Toast and biscuits, whilst still insisting she cooked for herself every day (in her head she did). When you next visit it may be worth keeping an eye on what she is actually eating as opposed to how much she is eating.

I must try the "where is my purse" diet - sounds good .

Sue

 

[dollyc]

This also could be my mum but she needs someone really all the time now to keep her in sync with time and space but she says she is fine and there is nothing wrong with her but just complains all the time she is lonely and that everyone has left her in a place she does not recognise.

Day care did not work, the befriender did not get past the door even for an assessment, the carer's got to the point where they said there was no point them going as they could not gain access. The psychiatrist got short shrift, the CPN is the only person who gains access relatively easily. It is all so very difficult - if she had this support she could stay at home longer but sadly we are fast coming to the conclusion the CPN came to several months ago that it is getting to the point she needs 24 hour care.

I suppose it gets to the stage anyway, when they live on their own, that no matter how much day care or support they have there are still gaps in the day where they are left to their own devices when anything could happen and their safety is compromised.

It doesn't help the guilt bit though.

 

[Baldeagle]

Thi could be our story, we tried everything too but gave up in the end. We felt guilty that she would not accept help of any kind apart from a carer going in twice a week. We too tried to get her to move closer to us, this after living with her for three months. We had to move back home for the sake of our sanity. She initially agreed to sell her house but then ordered us to take it off the market. She too told us constantly that she was lonely at the same time telling us she liked her own company.
We were forever trying to persuade her to accept help or aids to make her life more comfortable but to no avail. She drove everyone away with her spitefulness, in the end she only had the carers and gardener to talk to. With us if we stayed too long the visits always ended in confrontation, she seemed to thrive on arguments!
Following a fall a couple of months ago she was unable to care for herself and was placed in a nursing home. She is happy with the home, the staff and the food. At least we know she is being cared for.
It is a rough road and we seem to have been feeling guilty for one reason or another for the last four years. The stress is now gone but the guilt lingers on. If some one could invent an anti-guilt pill they would make a fortune selling it to carers. You are doing all you can, we put so much into caring for MIL that the SS ordered us to back off as we also had a life. Best wishes and please do not beat yourself up, you have done your best but you will not win until your Mum lets you!
Polly

Hi Polly,

Thanks for the encouragement. The emotional conflict and role reversal that takes place is very strange and something that my friends probably don't fully relate to. Something that is obviously the sensible option is very hard to make a reality, especially when you're talking to your Mum. Very brave of you to attempt to move in - no way we could even contemplate the rows that would ensue. By Sunday, she would be brewing for a row if we stayed (to the extent that she took me aside one day and said, 'you are welcome here, but don't come here with your brood' just to create a situation).

In short, now it's all about short visits. And I don't feel guilty (and nor should you). We have a life, She can't cope with any more than me staying over, but I'm not going to miss out on my family growing up.

The unfortunate thing about Alzheimers, as I understand it, is that the traits that were the worst in the first place get exacerbated. The good gets forgotten, and the bad is often easily recalled - again and again

I hope your MIL is doing OK and I'm sorry to hear about the fall she had. I fear that it will take something similar for my Mum to move out and probably get a better quality of life (which she'll end up havnig to pay for, which is another kettle of fish...).

At least I know that I'll stand a good chance of getting a call in a short period of time from something happening (God-forbid it does).

Take care,

Baldeagle.

 

[Baldeagle]

Hi

I haven't posted here in a while but felt I had to respond to this.

Are you sure your Mum isn't my Dad? We have had exactly the same for the past six years and have got absolutely nowhere. He did agree to a befriending service but then would not let them in because they were boring!! so I'm afraid I cancelled it. I was more than happy to pay £16 an hour if he got something out of it but not when he was not letting them help.

I live 200 miles from Dad and we go for the weekend every four weeks. We can no longer bring him to stay with us as it totally confuses him as to where he is and who we are. He might get used to it eventually if he stayed for longer but my OH draws the line at having Dad live with us permanently and in my heart of heart I know it would not work but the stress and worry of knowing Dad is just sitting there day after day, despite all our efforts, has brought me to the edge of breakdown.

If anyone comes up with a solution I will fall at their feet in gratitude.

Linda

Linda,

Sounds like your old man and my Mum are a match for each other. She doesn't like going to groups as they're full of old people (she's 87). She turned away the Community Transport guys who were going to take her to the Church social club as she had a 'headache'. She has the house full of clothes, but insists on wearing a house dress that I certainly remember when I was growing up (held together by my cousins nappy pin). Then again, this is no more insane that a Memory Clinic (people with memories) sending a appointment (to be remembered) to someone with early onset Alzheimers (who struggles to remember where she lives, let alone an appointment).

The sooner we bite the bullet as a nation and realise that we need to invest in research (and in the short term, the Alzheimers jab) the better.

Linda - make sure you look after yourself - the first rule of first aid is to make sure you're OK - otherwise you're no use to the person in trouble. I now focus on things I can control - everything else, I just go with knowing that I have done what I can.

Take care,

Baldeagle.

 

[Baldeagle]

This sounds like what I will have to face with my own mum in the near future: 200 miles away, lonely but reluctant to mix / get help/ constantly remarking on not having seen a soul, etc. The only thing I'd say is that with my mum, I can phone her and get that sort of negative stuff at one point in the day and then phone her again a couple of hours later and she is much more positive - so I never quite know how 'deep' her own moods are. (Having said that, she used to be always quite positive, so she is deteriorating, I suppose.)

Hi,

Funny you should mention swings in mood - I always find Mum to be a bit more positive on the phone after she has eaten something. It takes her until late afternoon to eat her lunch as she's not always ready to eat when the meals on wheels turns up at 1pm - sometimes she just warms in up on the radiator under a towel - not very appetising, but saves her going near the gas hob I suppose! Lesser of two evils.

Rgds,

Baldeagle.

 

[London1]

Have you tried finding a local centre that is willing to have her attend and then ask he if she would mind accompanying you,not for her sake but for yours. New experiences are always scary, almost like the first day at school.

I ran a therapy group where one of the ladies constantly talked about her deceased husband, I think that she was doing this constantly as it was a time that she was happy. In a sense she was mourning over her loss still. After about 4 weeks, she settled in to the group more, stopped interrupting and hardly ever mentioned her husband.

I suppose what I am trying to say is persist as you may find that once she goes somewhere she might enjoy it, you could even keep her company for the first couple of visits!