Feeling so useless

[Morg]

Please can I start with a thank you to all involved with this site. I have watched and read so much here over the last 3 years and have managed to keep a little ahead of the game thanks to this invaluable information. Done POA, council tax disregard, contacted ss, pay for care agency. To read others heart felt stories and how they struggle to deal with the bombardment of emotion helps so much.
In short my mum is 82, lives 120 miles from me, has had memory issues for 5 years, had a diagnosis of vascular dementia just over two years ago, lives alone with a care agency coming twice a day to give her tablets (this has happened for past 6 months as I found tablets everywhere and eventually a nomad box system wasn't working either ). Until 2 months ago she enjoyed going to town everyday for a coffee and walk around, managing a bus there and back. However she only manages once a week now as she is physically weaker. I manage to see her for an over night stay every three weeks, I ring her twice a day. She has a skin condition which has meant a district nurse coming 3 times a week to wash and cream her legs. Having just been over I can see mum struggling with everything. She was surrounded by newspapers and packaging dirty washing etc it is clear she is now suffering from a bowel issue causing messy clothing sheets carpets etc I have put right what I can but she isn't easy to look after as she feels she's fine. She hasn't showered or bathed for a long time and is very unpleasant to be with now. She has never wanted to be a "nuisance" and has refused moving to be with us. But actually her being a distance away is really hard my day and night is spent worrying about the whole situation picturing her this once smart capable woman now cold lonely and no doubt frightened but never discussing emotions.
I have contact with a social worker for mum who is lovely and will visit mum if I ask but if mum always so no to extra help what can we do. Sorry feel like I have taken from this site and not given.

 

[Izzy]

Good morning and welcome to the forum. You certainly haven't taken and not given! The forum is here for you to share and receive support and I'm glad you've shared now.

I'm so sorry to hear about the situation with your mum. I know it's hard if your mum won't accept extra help but it sounds like she should have her needs assessment reviewed. As you have contact with a social worker would it be possible to arrange a review when you can be present? It might be an idea to drop her a line listing your concerns before the review.

 

[marionq]

Everyone gives on TP even if only by sharing their experience. Someone else out there will be worrying about the same problems.

It is likely that the situation with your Mum will deteriorate until she needs medical or hospital care and at that point more drastic decisions can be made. This in between stage is very difficult as she will resist help even though she clearly needs it.

Would a cleaner coming in once a week be a start? You could suggest to her that this would help you spend more time with her rather than start cleaning when you visit. I know that is not likely to be acceptable but the only other choice is to wait until events bring about crisis change.

If you find a solution then share it with us. Meanwhile best wishes.

 

[canary]

Hello @Morg and welcome. Im glad that you have found the site helpful. Dont worry about being able to give to the site yet - there will be time in the future.

If you ask any person with dementia whether they want something the default answer is usually no - and when this involves an understanding that they are having problems this becomes a very definite NO! How did you get the carers in to sort out her medication? Did you just say - this is not working and booked them in? Could you increase the time that they are there and/or the number of times that they come? You are lucky that your mum accepts carers coming in - my mum wouldnt let them in the house and it took a stay in hospital with a TIA before she got the care she needed (ie moving to a care home)

 

[Morg]

Good morning and welcome to the forum. You certainly haven't taken and not given! The forum is here for you to share and receive support and I'm glad you've shared now.

I'm so sorry to hear about the situation with your mum. I know it's hard if your mum won't accept extra help but it sounds like she should have her needs assessment reviewed. As you have contact with a social worker would it be possible to arrange a review when you can be present? It might be an idea to drop her a line listing your concerns before the review.

Thank you Izzy for your reply so early. That was my job for this morning. I need to find her email and write things down as when we meet with mum, mum makes faces at me and can be quite harsh after as though I've made things up. She is now so forgetful or maybe just unaware she denies any district nurses come to treat her. I will make this my priority today thank you again.

 

[Grannie G]

Hello @Morg . It`s good to see you have now decided to post.

It sounds to me as if your mother has become vulnerable and is now at risk. The district nurse and the social worker will know this but if your mother is still considered to have capacity I suppose there is little more they can do.

She has never wanted to be a "nuisance" and has refused moving to be with us. But actually her being a distance away is really hard my day and night is spent worrying about the whole situation picturing her this once smart capable woman now cold lonely and no doubt frightened but never discussing emotions.

There may come a time when your mother may be persuaded. Would it work if you told her it would be for your benefit rather than for hers. If you told her you would have peace of mind if you could be with her all the time.

Could you talk to the social worker about your fears of a crisis situation and ask her to back you up.

 

[canary]

when we meet with mum, mum makes faces at me and can be quite harsh after as though I've made things up

She probably does think that you are making things up. In her own mind there are no problems and she is coping fine.

My mum was adamant that she was doing all her own shopping, cleaning, laundry, housework, cooking etc etc as well as going out for a walk every day when one look at her and her home told you otherwise. In her own mind, though, it was totally true.

 

[Morg]

Everyone gives on TP even if only by sharing their experience. Someone else out there will be worrying about the same problems.

It is likely that the situation with your Mum will deteriorate until she needs medical or hospital care and at that point more drastic decisions can be made. This in between stage is very difficult as she will resist help even though she clearly needs it.

Would a cleaner coming in once a week be a start? You could suggest to her that this would help you spend more time with her rather than start cleaning when you visit. I know that is not likely to be acceptable but the only other choice is to wait until events bring about crisis change.

If you find a solution then share it with us. Meanwhile best wishes.

Everyone gives on TP even if only by sharing their experience. Someone else out there will be worrying about the same problems.

It is likely that the situation with your Mum will deteriorate until she needs medical or hospital care and at that point more drastic decisions can be made. This in between stage is very difficult as she will resist help even though she clearly needs it.

Would a cleaner coming in once a week be a start? You could suggest to her that this would help you spend more time with her rather than start cleaning when you visit. I know that is not likely to be acceptable but the only other choice is to wait until events bring about crisis change.

If you find a solution then share it with us. Meanwhile best wishes.

thank you so much for your response I am now a crying heap ba cause so many of you have come back saying all the things I have been thinking but feeling so unsure about. I am so overwhelmed by guilt worry and so much more,but already today I feel a bit of tension lifted. I don't think I realised the growing effect this has been having. I have an amazingly supportive husband and two daughters but often feel it's all they here about. So grateful thank you.

 

[karaokePete]

Hello @Morg, welcome to the forum from me too.

I don’t really have anything to add to what has been written and just wanted to welcome you. Maybe I could just say that you shouldn’t worry about talking about nothing other than your mum as I have found that when people are supportive, even when non family, they can be amazing and won’t mind that at all. It’s good that you have a supportive family.

 

[SKD]

With my Mum for many things I just organised extra care without discussion - it sounds harsh but I found that if I asked the answer was no but if I did something there was a chance she would accept it. Mum initially had one care visit a day which eventually went up to four and I just kept adding in visits until she moved into residential care. It is very hard to get your head around the idea that your parent can no longer make appropriate decisions and can be heartbreaking - it certainly took me some time.

 

[Morg]

Hello @Morg, welcome to the forum from me too.

I don’t really have anything to add to what has been written and just wanted to welcome you. Maybe I could just say that you shouldn’t worry about talking about nothing other than your mum as I have found that when people are supportive, even when non family, they can be amazing and won’t mind that at all. It’s good that you have a supportive family.

Hello @Morg, welcome to the forum from me too.

I don’t really have anything to add to what has been written and just wanted to welcome you. Maybe I could just say that you shouldn’t worry about talking about nothing other than your mum as I have found that when people are supportive, even when non family, they can be amazing and won’t mind that at all. It’s good that you have a supportive family.

thank you karaokePete. I am very fortunate to have the support.

 

[Morg]

With my Mum for many things I just organised extra care without discussion - it sounds harsh but I found that if I asked the answer was no but if I did something there was a chance she would accept it. Mum initially had one care visit a day which eventually went up to four and I just kept adding in visits until she moved into residential care. It is very hard to get your head around the idea that your parent can no longer make appropriate decisions and can be heartbreaking - it certainly took me some time.

Thank you SKD i have managed to "blame " doctor and nurses for putting things in place. I think I need to be more business like. A friend suggested I think of mum as a more distant relative and sort what is safe and sensible without too much emotion. Perhaps easier said than done however thank you