I feel lost

[sanpan1972]

Hi everyone I’m new here . My mum has been having problems with her memory for years now . We lost my dad nearly 2 years ago . Just after he passed she was diagnosed with Alzheimer’s and dementia. Early stages the doctor has put her on medication to try and slow things down . I’m crying writing this I’ve lost my dad now I’m watching my mum disappear slowly . Her whole personality has changed . She’s so selfish , stubborn.its like she’s living in a bubble . I’m confused as I’m not sure if it’s the illness or deposition or grief . I just feel so lost I don’t know what to do . My brother lives a long way from us . So it’s me . He only sees the good bits of mum

 

[Duggies-girl]

Sorry that you are in this situation @sanpan1972 I was where you are sometime ago. Mum died nearly seven years ago and dads memory problems soon became apparent. I started to spend lots of time with dad because he was so lonely and I was worried about him.

He was diagnosed with alzheimers just over a year ago by the memory clinic although I had correctly diagnosed him myself long before that but we had just muddled along before.

It's good that your mum has been diagnosed early and that she has been prescribed medication. It was probably prescribed a little late to help my dad but who really knows.

I can't give you any advice other than try to look after yourself and accept any help that you can get. Don't feel guilty about anything, it is not your fault, it is nobodies fault, it is just an unfortunate fact that has to be dealt with.

You must look after you, it's important.

Keep posting as this is a very supportive place and full of information..

 

[nellbelles]

Hello @sanpan1972 welcome to TP although I’m sorry that you needed to find us.
This forum is friendly and very supportive so I hope now you have found us you will continue to post.

If you would like more facts on dementia I’ve put the link to the Alzheimer’s society’s fact sheets on here for you
https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

 

[karaokePete]

Hello @sanpan1972, you are welcome here and I hope you find the forum to be a friendly and supportive place.

Do take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area. If you are interested in these, clicking the following links will take you there

https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

https://www.alzheimers.org.uk/find-support-near-you

You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc.

 

[marionq]

Three years ago I was you. Lost, despairing, no hope. Never experienced anything even close in my life as the heartbreak. I’m not that person now although we still have issues.

So what happened? Johns psychiatrist persuaded me to try him on a small dose of antidepressant ie Trazodone. It helped and so we gradually increased it to ease his anxiety and sundowning and eventually his wandering. At the same time he started one day a week at a day centre where he took a wee while to settle in. In fact he escaped once but we got over that. He built up to four days and I started to feel I could cope with him.

He is now frailer so we are reduced to three days at the centre and his medication is slightly reduced and I will watch to see if it can go further.

Ask, insist, that you get help. It is there and you need to get everyone onside you can. Join carers groups, singing groups, anything you can where you meet people and get ideas. I am open to all ideas and sift through to use what I can. Good luck.

 

[sanpan1972]

Wow thank everyone. Your kind words and support mean the world . It’s so hard not knowing what to do . If to encourage my mum to do things independently or if to take over and just do things . She seems to have lost the ability to use the phone , and finds it difficult to get her point over only telling me half the story . I’m not sure if she realises she does it but she makes me feel very very guilty . It’s not what she says her her attitude towards me . Loosing my dad was hard but this situation and awfull illness is so emotionally draining. I’m just tired all the time

 

[LHS]

There is no right or wrong way to proceed but what I have learned with my mum is to just go with the flow and also focus very much on the here and now. You cannot reason or argue as it will get you nowhere and you both just get upset. I am also learning that sometimes you just have to do things and make the decisions on their behalf, even if it's a tough decision. Life is not fair and this wretched disease changes a person's personality. Sometimes you're damned if you do and also if you don't.

 

[canary]

It’s so hard not knowing what to do . If to encourage my mum to do things independently or if to take over and just do things .

There is a delicate balance between encouraging them to do things to maintain their independence and taking over things that they can no longer do which is causing them anxiety and stress. If what they are doing puts them at risk, then you have to take over, but other things they might be able to do if you do it with them. I found I would start off advising, then helping them, then gradually found I was doing more and more until basically I was just doing it with them watching! Alternatively, once it gets too hard for them they may keep putting it off, or simply decide that they dont want to do it anymore

 

[karaokePete]

I think Canary is correct - a balance has to be found.

My wife liked to do things like the cooking and dusting/vacuuming. However she can no longer manage machinery or remember ingredient lists so we work as a team.

In the kitchen I set out the ingredients, set the cooker, assemble the food processor, set timers etc., and my wife happily washes/chops veg and fills/empties pots etc. As a result my wife happily tells people she can still do all the cooking. With the dusters/vac I tell my wife where she can find said items and empty the vac and check/clean it's filters which means she no longer gets frustrated by thinking we don't have any dusters or that the vac is broken(full or clogged filter!) and she is happy thinking she is still contributing - which she is. With the laundry I use the machinery and my wife helps hang out/put away.

Yes, overall I now do a lot more work than I used to do but my wife still contributes where she can with these routine tasks. The more complex tasks, like finances, I have had to take over 100% but I still run ideas past her to let her think she's making a contribution - which she sometimes does when she has a moment of insight that makes me think again.

I empathise with what you say about the emotional drain and always feeling tired @sanpan1972. It's the repeated statements/questions and endless searching that exhaust me more that anything because of the emotional drain. It does get better the more you get used to it as it gets easier to just repeat responses, rather than get wound up, and you learn where most things are 'safely put away' so the searching takes less time! But yes, it's hard.

 

[Lynmax]

I am lucky in that I share caring for Mum with my brother and sister. With our support for shopping, medical appointments and sorting out issues as they arise, she is still able to live on her own. She has cleaners and a gardener to help with chores and we eat out with her several times a week to make sure she has a good meal then she manages to prepare snacks for herself on other days.

But the level of support needed increases bit by bit and we have just register the LPA with mums bank to reduce the chance of her being scammed again - we needed to make sure she does not have access to too much money in her current account as she has just written a cheque for £500 to a non existent window company which we were unable to stop. So now all her money except for a few hundred pounds is in a savings account and we have access to all her accounts to keep a close eye on things.

I think that when a pwd still has some capacity that the kind words f support we can offer has to be made discreetly, it is no use arguing with mum about some of her confabulation says it just makes her angry so we go along with her stories as much as we can. My mum is not aware of how much support she has which is fine with me for now.

This is a great website to get information and advice as your needs change, also a good place for emotional support if you need to rant or complain!

 

[Grable]

I was in a similar position to you in 2015, Sanpan, and would say that all you can do is your best in these circumstances. There are two pieces of advice that I do have: 1) Try to get your mum involved in some local activities. Mine used to love singing, and even when she couldn't find words for a conversation, she could remember those to old favourite songs. Locally, there was a 'singing for the brain' session - two hours of singing. I live 200 miles away, my brother worked full-time and his family had turned against Mum, so getting her to the group was a challenge, but the problem was solved by employing a local caring agency for 3 hours a week. That got Mum there, the carer and she both enjoyed the sessions, and she got back again. There was also time for the pair of them to have a chat and the carer to make Mum something to eat. In fact, they would have lunch together, so it became a once-a-month trip for Mum to look forward to. As the disease progressed and Mum got worse, it remained a focal point of her life - but I'm pleased we started this before she became really bad, or I wouldn't have suggested it/ she would have refused to go/ the carer wouldn't have been prepared to risk taking her.


A knock-on effect of that club was that Mum already knew a carer, so when she needed more regular care in her home, it wasn't quite such a trauma organising it.

2) Do as much with your mum as you can now. Mine died last year. The previous year, she had wanted to go on holiday with a club she'd belonged to for 20 years. The secretary phoned me to tell me she had booked, but they really didn't think they could cope with her in her condition, so I asked if it would be OK if I went along, too. That 'holiday' was difficult:: Mum was also suffering from oesophageal cancer, so finding something that she could eat was a trial (the hotel - The Clarence in Blackpool - couldn't have been more helpful!); walking was difficult for her (she was suffering from sciatica, too); she was puzzled about being in the hotel and couldn't find her way around. However, I saw her laugh more that week than I had for months or than she ever did afterwards; being among her friends was a great boost to her mood; she really enjoyed the hotel's entertainment. For me, it means I've got something to look back on.

I wish you the best of luck and hope you, too, can find things to do with your mum that will give you comfort in years to come!

 

[sanpan1972]

Thank you all again for your support and advice . I don’t feel quite so alone now . This group is absolutely amazing.through the links that were sent me I’ve sent off for some leaflets also I’ve found a Carers support group in my town

 

[sanpan1972]

I’m finding it hard to get the balance between being a daughter and a carer .i find it a struggle at times to not want to take over . My brother doesn’t see the day to day living struggles . When he comes home or mum stays with him it’s like we end up speaking about two different people. He doesn’t spend long enough time with her to see . Then I get very resentful of him he gets the good bits of mum . I get the caring , mood swings , attitude, and guilt . If I tell mum I’m going out she doesn’t really say anything her attitude towards me is she ignores me . Does anyone else have these problems? X

 

[canary]

My brother doesn’t see the day to day living struggles . When he comes home or mum stays with him it’s like we end up speaking about two different people. He doesn’t spend long enough time with her to see . Then I get very resentful of him he gets the good bits of mum . I get the caring , mood swings , attitude, and guilt

Thats a very, very common thing. Its called being in "hostess mode" on here. PWDs have this amazing ability (almost certainly subconscious) to sort of pull themselves together and suppress the dementia symptoms for a short while so they appear so much better than they really are. Unfortunately they cant maintain it for long and it takes a lot of effort, so they only do it when there someone comes to visit them, or they go to the doctors. This means that family member comes to see them, they go into "host/hostess" mode, the family member thinks they are not too bad and that you are exaggerating the issues, then they go home , the PWD cant maintain the "host/hostess" mode any longe, is tired and grumpy from the effort you have to pick up the pieces

 

[LHS]

I’m finding it hard to get the balance between being a daughter and a carer .i find it a struggle at times to not want to take over . My brother doesn’t see the day to day living struggles . When he comes home or mum stays with him it’s like we end up speaking about two different people. He doesn’t spend long enough time with her to see . Then I get very resentful of him he gets the good bits of mum . I get the caring , mood swings , attitude, and guilt . If I tell mum I’m going out she doesn’t really say anything her attitude towards me is she ignores me . Does anyone else have these problems? X

I’m finding it hard to get the balance between being a daughter and a carer .i find it a struggle at times to not want to take over . My brother doesn’t see the day to day living struggles . When he comes home or mum stays with him it’s like we end up speaking about two different people. He doesn’t spend long enough time with her to see . Then I get very resentful of him he gets the good bits of mum . I get the caring , mood swings , attitude, and guilt . If I tell mum I’m going out she doesn’t really say anything her attitude towards me is she ignores me . Does anyone else have these problems? X

Yes, I am in exactly the same situation. My brother lives 200 miles away and sees my mum maybe 4 to 5 times a year. I always feel like he thinks I am over-egging mum's condition and ongoing deterioration. Then when he visits she perks up and seems much more 'normal'.