Support for those with a parent suffering from dementia. Pull up a chair and talk to those who understand

[CMOTDibbler]

There seems to be lots of us here struggling with someone close that has dementia - be it Alzheimers, Fronto temporal, vascular, Picks or any of the myriad others.

So come and chat with those who know how it feels to have to choose a meal from a menu for their own parent, what its like having small children and a demented parent at the same time, and how you explain to children just why grandma says such odd things

Hello again. I have had a terrible visit to my Mum today. She didn't know me and was really nasty when I touched her arm. She ended up refusing to speak to me. The home are testing for another UTI. Last week was so good when she knew me and chatted lucidly. I left early today as i was just making her worse. My sister was with me and she said it was just a waste of time going and won't go again for a while.

Poor Pudcat. At least you have the memories from the week before. It is sad seeing our parents drift away, but a chance every so often to see some of the person they were.

And Bob, you probably are waiting for the crisis, or SS to be clear that intervention is necessary. Better the latter. There is a miserable and nagging anxiety when you know your parent is not particularly safe where they are. Any time they dont answer the phone you inevitably think the worst. But our parents, like us, are allowed to make bad decisions. All we can do is ensure that those bad decisions don't create unsustainable or unwanted burdens on us or our families. I hope your brother is OK. It sounds as if his life could really be improved if you can get him to the right setting.

WBN. I would not blame the doctor. Your mother cut you off; she decided she wanted your brother to manage her care; she made unsubstantiated allegations which could have had serious repercussions. All your doctor is doing is responding to the impact on your health orf your mother's actions.

Years ago I did a course which covered transactional analysis eg parent/adult/child. (Google Eric Berne) Not surprisingly our mothers are used to parent/child and not always a healthy parent child model at that. However as our mothers need care, this has at times to be reversed, as we become the parent talking to health professionals, giving instructions for medication etc. At the same time we are adults and for most things an adult/adult relationship is both more appropriate and easier.

My concern would be that your mother wants to resume a relationship because either:

1. she wants you to step back in to some of the day to day stuff, perhaps because she hopes she can then do away with her 24 hour carer, perhaps because she does not trust your brother to be around.
2. she is lonely now she is not part of the CH community.

Her current care arrangements are probably not sustainable. You are not there to prop them up. Nor should she think she can continue treating you as she has.

I would be careful. This is a good opportunity to renegotiate your relationship, but you probably need to play hard to get. Yes you would love to go round...but not today, perhaps in a week's time. You might then make it clear that her behaviour and lies have had a huge impact and that though you are happy to see her you also need her to acknowledge this. (The counselling should help work out how you might do this.)

I think it is telling that she wants to see you but not till the carer has gone as she does not want to lose face. Her boundaries. Now you need to impose some of your own. Otherwise, and given what has happened, I suspect you will find it hard to rebuild any meaningful relationship.

I'm sorry Pudcat, it's really hard all this.

To be honest I'm not at all convinced it will be possible to build a meaningful relationship with Mum. I feel very very resentful with both of them. I'm doing a bit of local networking with a view to jobs next year and was just checking someone's website and am having a discussion about something I was working on for my Brother in a field that this guy works in. A huge wave of pissed offness rushed over me that I can't do a job I enjoyed anymore.

I already decided I will say when I'm going and I will be saying I have been very upset about all this. Not sure how much she remembers about the summer to be honest. I am determined to walk at the first sign of nastiness and friend has said she will get me out the minute she starts if she does. Really hope this isn't a ploy to get me on the H&W POA, but doubt it is. I absolutely won't be on it. There's this horrible gnawing sensation in me that I shall never be free of the stress of all this. We're going to be in the ridiculous situation of someone who lives on another continent and hasn't seen her for 4.5 years being her POA.

Not remembering is not really an excuse for bad behaviour. The behaviour happened. It must not happen again.

My mother has been pretty grim at times. I am not sure if she forgets as much as she says she does, but is has been helpful almost to have this distance. She may have a blank slate emotionally but I have not. I have referred to the time when she was very stressed, and have explained what she did and said, how hurtful she was, and the impact it has had.

I cant be sure it wont happen again, and I know I have some responsibility in not provoking her when we are both tired. But she is an awful lot better. I think she has understood that unless she was more careful, she would drive me away. Dementia is odd. A lot of my mother's instincts are still in place.

You still need a rest and to clear your head. I would be wary of resuming regular contact until you know where you want it to go and feel confident you can handle it.

Make sure you prioritise yourself Wynken. Needmoresleep (as ever) has some great advice there.

My oldies are struggling on. Mum has had a big downturn since her episode, and was very confused on the phone this morning when dad put her on to wish me a happy birthday. Shes spending most of the time asleep - she spoke to me, handed back to dad, and was asleep by the time I'd said she wasn't very good today

Best news this week - the solicitors doing mums LPA advised dad to do one too and he has! They are sending it all off this week, but told me that the OPG have a big backlog at the moment so it could be 6 months before its all finished

Happy birthday CMOT

Also good news on the LPA.

Happy Birthday CMOT. for later

Sorry to hear that your Mum is not so good.

Happy Birthday CMOT . We are both a year older in the same week! Sorry your Mum has had a downturn. I found Mum does after an episode. She seems to recover kind of in a week or two. That's very good about the LPA, though backlog ridiculous.

The LPA ALWAYS has a backlog. Sign of the times. But at least it's in the pipeline and will prove very useful.

Mum's went in end of March and was back by end of May which I thought was quite good. My Aunt wrote today. I'd told my cousin on the phone Mum was in CH and wouldn't see me.

She's said that's very bad, I must take control and check she's being washed, getting meds, clean clothes etc. Wish I had the language skills to explain all about capacity and POA but it defeats me at the moment.

Hello, can I come and join you?

A very short potted history:
Mum has dementia, she's 83 and has always been the loveliest mum anyone could ever have wanted. Dad is her carer, but he has major health problems himself. He is 86. Dad is lovely, but very stubborn, very hard work, very wrapped up in his own problems .....BUT he is absolutely devoted to my mum and does the best he can. Mum is now well down the dementia road...she doesn't know her 5 children, or 19 grandchildren most of the time. (Very occasionally we have a glimpse of recognition) She has not got a clue about who her great grandchildren are - which is so sad because she soooooo loved babies before all of this.
Dad won't accept any help at all - but then moans that no-one helps him! - "Help is for old people and we are not there yet..." is his pat answer when any is offered!
One of my sisters and I share the burden between us. I had been living abroad, but I have moved back here to be close to them and help them out as much as dad will allow. (DH and DD4 are still living 7500 miles away until next June - so not ideal for my family situation!)

I eventually managed to persuade dad that it would be a good idea to apply for a blue badge for mum as she gets really breathless and cannot walk far at all. We had her assessment this week. I went in with her and it went like this:
Assessor: Do you live in a house, bungalow or a flat?
Mum: A house (She's lived in a bungalow since 1982)

Assessor: Do you manage the stairs in the house?
Mum: Oh yes, I am running up and down them all day after all the children.

Assessor: How many children do you have?
Mum: Umm.....errrrr........I can't remember how many we have at the moment......we keep adding to them..........(I am the youngest and I am 47 years old!!!)
The assessor was lovely and took my word for how things really were!!!

I'd love to have somewhere I can come and "chat" about what is happening with people who understand!

Hello PA welcome you have come to the right place. We are all experiencing how exhausting and stressful having a parent with dementia can be, whether they are widowed or being cared for by their spouse ( in which case th ere is the other parent's stress to deal with).
For me the benefits here are being Able to say exactly how you feel about a given situation without fear of being judged/ misunderstood. With professionals I find I have to be " together" , judge what the agenda is etc.
with colleagues at work, they are not dealing with this kind of situation and I am conscious I don t want to turn into some kind of dementia daughter bore.
WBN be careful in dealing with your aunt.i have found over the years my father' s siblings are only too happy to issue requests and say I should be doing x, y and z. But they have done sweet FA to help and so now I take no notice of their demands. It was the same with my grandfather. His sister would ring and say he needed to be in a nursing home. But when I asked if she could go and stay with him for a week or to to help out, it was no. Fair enough they are by definition older, I m just saying don t let your aunt bully you.

Welcome PA . Like Bob I'm very aware of trying not to say too much to friends, though I've ending up doing so more than I would have liked. It's very difficult to understand it until you are living through it. This thread has been a lifesaver for me this year.

Bob, thanks for the warning. I emailed to explain it to her best I can. I'll just hide behind the language barrier if she won't accept I am not involved in Mum's care now and continues saying what should happen. Or give her my Brother's email, there's an idea..

WBN am I remembering correctly, is it you who has German relatives, is that what you mean by language barrier? I think siblings of the demented want to know they are safe, at a distance, and at their stage in life feel they are through with the caring thing. They also find it depressing ( it could be me) so lean on their siblings children to try and get things done. Again, don' t let her " guilt trip" you into getting over involved.
Phew that 's me done with the advice!

Yes, forgot to say that bit, she's German. She's also been cut off by my Mother who thought her and her DH were lying about her having cancer to get Mum to accept a lower offer on a house they jointly inherited. Anyone see a theme in my family and history repeating itself

I'll just chuck her Brother"s email if she's not happy. He speaks bugger all German and won't care what she says anyway.

Dad died on Friday. Having had a better week, he collapsed and was dead within 15 mins.
Even though the last 7 months have been so tough, I'm grateful for every minute I spent with him.
Thank you all so much for the support you gave me. Sounds like hyperbole but sometimes it felt like you were the only people who truly understood.

PostBellum I am so very very sorry, you and your family are in my thoughts.

to you and your family

I hope you feel proud of the support you gave over a very difficult period.

PBB my thoughts are with you. You can indeed feel proud and I hope this helps with the grieving process- not having regrets/ guilt to contend with.

PostBellum My thoughts are with you. Your Dad is at peace now.

Hello PA not a board we would like to be on but it is a good place to rant and rave if necessary without being made to feel dreadful.

I've had a call from the counsellors and am starting after half term. The lady doing the assessment totally got the whole dementia aspect of it all and said she has a couple of counsellors in mind to place me with who she thinks will be good in my circumstances.

I'm very angry about how I have been treated at the moment and the continued absence of my Brother. Any reports of unexplained volvanic activity down south will be me erupting !

Hi PA, The decline through dementia is very sad.
Do stay around, share experience, ask questions, rant or whatever.

My latest is that we are in the process of buying a flat near my mum. Not quite the same as moving 7,500 miles, but still something. A few weeks back I found myself stuck in awful traffic trying to get back into London. In total I spent 6 hours in the car trying to run one simple errand.

My mother does not want, not surprisingly, to move back to London so we have decided to go to the mountain as it were. We cant really afford it so will need to rent out initially. Thats fine as my mother is rebuilding a good social life and so is less interested in seeing more of me than she already does. It will be good though to have a base either for when she has a health crisis or as her social world recedes. Its a nice part of the country which we have never really explored, so exciting.

Hi WBN that's good news re the counselling.
You are right to feel angry you have been both put upon AND scapegoated. Good counsellling should help to gain a feeling of better control over the situation, and objectivity.

To put my earlier post in context, my mother's prognosis has been given as 15 years. The idea of a 15 year commitment to days spent on the motorway was really depressing. So a nice solution to a problem I had been worrying about.