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

Hi Wynken yes Dad is on Aricept but misses most of his drugs. With dementia there seems to be malevolent ghost in the machine that screws things up. If i ring and say Dad it's time for your evening medicines, please take them, he'll invariably say " oh yes, i've taken them". Then I'll visit and see nearly all the week's drugs are still in the blister pack. I think he has a memory of taking the drugs at some point in the past, and thinks he's just taken them.
Anyway, Aricpet can cause stomach upsets so maybe that's what happening with your mum. I hope the memory nurse's visit is helpful.

Yes I absolutely know what you're saying about the taking of drugs , been through that. Mum had Carers already for her legs though so it was easy to get the drugs locked into a box for them to start dishing them out. When I say easy I mean that was the day I had to go to GP due to my blood pressure going through the roof, that kind of easy !

Whilst on the phone to surgery I summoned up my courage and asked for my cholesterol result. The GP had apparently signed them off as ok. I think they could be better and will work on that but am relieved to know. Blood Pressure is reducing slowly as well. I've sent myself a target of having good BP and cholesterol readings plus having lost a decent amount of weight by the time I'm 45, 18 months. Then if I do end up with Vascular Dementia I can at least know I tried to prevent it.

Yes wynken I know what you mean. Dad was v overweight in middle age and used to scoff at the whole concept of healthy eating.he smoked, and eventually got diabetes and at least 2 heart attacks. I think there s evidence of a link between poorly controlled diabetes and alzheimers (as well as vascular dementia). My cholesterol was a bit above ideal but the
HDL cholesterol was good so I m not too worried. And most of all I didn t have diabetes, unlike half my family. It s true, we can only do our best then if we still get it we'll know we didn t bring it on ourselves. Our parents probably didn t have this information and didn t realise what the risks were.

I'm also trying to minimise my risk - both my parents have type II diabetes and inject insulin, so I'm at high risk for it too. Am now at exactly mid BMI range and have great cholesterol levels, and intend to keep it that way now.

Am paranoid about not being able to find names or remember things though

Hi everyone, hope you don't mind if I join you? My dad was diagnosed with Alzheimer's a couple of years ago now, and is slowly but steadily getting worse. He and my mum still live independently in their own home, but are both in complete denial about the need for any outside help.
My mum will moan on the phone to me about how worried she is, and the things that dad has said or done, about how she can't leave him alone at all, he follows her to the bathroom, has the same conversation over and over again.....but when I suggest any kind of help - Carers, a much needed cleaner, a social work appointment - she won't hear of it.
Their house is not filthy, but definitely grubby, and badly in need of painting everywhere, but mum says it would be too disruptive to dad to have anyone in to do anything.
I live 150 miles away and have ds1 who is asd with associated learning difficulties, and dh who is in a nursing home having suffered a catastrophic brain injury in a car crash several years ago (totally outs self). I am guardian to dh and will also be to ds when he's older, so when it comes to sorting out dads paperwork and things, I know what I'm talking about - but will mum listen??
Anyway, that's me.....apart from my complete paranoia that I too am losing my memory, so glad that other people feel that way sometimes!

Hello, can I join in? Am at home today, off to Mum's flat in an hour or so as she is coming out of hospital today. There is supposed to be a care package in place, from previous experience with other relatives I have no confidence that this will happen but we will see.

I am so sorry that there are so many on this board, but good to know I am not alone.

We have been unable to get an official diagnosis for Mum, how she manages to pull out the answers for the medics I have no idea, most of the time she has no idea who she is and has often been brought home by lovely strangers because she has gone out and forgotten how to get home.

At the moment I am feeling completely overwhelmed by it all. I have siblings but they live 100s of miles away and though they come over occasionally the day to day low level worry is what I find most difficult.

Reading the experiences of others I realise I am actually quite lucky.

Hello all, just introducing myself as a new poster to this part of MN. My mum is in residential care and I'm expecting a formal diagnosis of dementia next week.

Can someone explain to me the different types of dementia or point me to another website please?

Hi to all.

This is a club none of us want to be members of, but comforting to know I am not alone. Less comforting to hear about others, whose burdens are so much greater than mine.

I cant claim any great knowledge but based on my recent experience (mum diagnosed with Alzheimers last week) the Alzheimers Society forum Talking Point is good, forum.alzheimers.org.uk/forum.php though slightly intimidating as some posters appear saintly, whilst the situations of others posting after a day "trapped" with someone with dementia, are quite heartbreaking. The organisation does not seem to care which form of dementia people are suffering from and I found the help line really helpful. Alzheimers also publish some useful and detailed briefing notes, which my mums local memory service kindly copied and sent me. I think these cover the various forms of dementia and also the likely progression.

(I found Age UK much more interested in getting my contact details so I could be added to their fundraising mailing list - but I may have called on a bad day.)

A confession also. My mother is extraordinarily good at hiding her lack of short term memory. I was quite mean at a couple of assessments, adding a couple of direct questions of my own "what are the names of your grandchildren" which I knew she could not answer. Once thrown she found it difficult to resume the facade and the assessment then better reflected her situation. (The psychiatrist who gave her her diagnosis was very good at gentle questions requiring factual answers, which confirmed the memory gaps. I wonder whether SS and others might prefer not to find problems.)

Given an Aricept prescription can make a difference to some, a diagnosis might be important.

Now to go back to the task of adding POA to various banks accounts. My fourth visit to one. If anyone else is frustrated with the process of taking over financial control, do say. I feel a rant coming on. The emotional and caring/medical side is one thing, but I get closest to meltdown when faced by jobsworth bank cashiers and utility call centres.

Hello to new joiners. With apologies to Groucho Marx nobody wants to be in this club, but it is a supportive place and I have found offloading and hearing other people's experiences to be quite therapeutic. Prior to this, with no friends in this situation, I was feeling quite isolated.
For the different types of dementia, I guess wikipedia could be a good resource, plus the Alzheimers Society- they have info on other types of dementia.
Bigoldbird I identify with the daily low level worry. It's debilitating. I just hate the sound of the phone ringing knowing that 9 times out of 10 it's Dad, or someone else who's concerned about him. I only have peace of mind when I'm uncontactable. Dumpylump a recurrent theme from many posters is the co dependent relationship between spouses when one has dementia. Woe betide anyone who suggests changes to their precariously balanced system for living. My mum died 18 years ago and in a weird way it's a relief she's not having to go through this, and I'm not having to deal with her stress and anxieties as a carer for Dad.
Finally Needmoresleep- something amazing happened last week- a very young bank employee was sympathetic and competent, and set me up for internet banking on Dad's account straight away. Then she revealed her Dad had suffered a catastrophic stroke and was at home with 24 hour care. She understood.

Hello to new people sadly in the same boat. Am back from attempt number 2 at Barclays. I was ready to kill the woman if she wouldn't do it today but then a strange thing happened, she was incredibly helpful. She's in her 40's with two sick parents, one terminally so. We actually ended up having quite a laugh.

However I haven't yet been brave enough to try any utility companies. Memory nurse coming in a bit, Mum still feeling sick despite stopping Aricept on Monday. Yesterday my DD was off sick again and completely neglected. Today DS had no clean school trousers. I've no idea how much homework he has. I spent ages cleaning putrid spuds from a cupboard. I don't think increasing the care package will work, she will still need me to do loads. Maybe not all the tin but when she's feeling under the weather.

I found some self contained flats attached to a home and would love for her to go into one but now she wants to stay at home. I don't think I can cope anymore and am hoping when she sees them Tuesday she'll want to move in whilst they have one available. That would be too easy though

The world has now divided into two. Those who understand, and those who dont. I dont have much moral high ground here as until my dad became terminally ill four years ago, I did not understand. Now I am ready to volunteer for some task force aimed at ensuring banking and utilities are old people friendly. Forget the idea of computer training. No help if you cant manage a TV remote.

With utilities, you can get some amazingly helpful people, like the Scottish BT girl whose nan was at about the same stage. Sometimes it appeared cultural. I had amazing support from a lovely British based West African guy who was clearly shocked that my mum had been living without heating, and that one of his colleagues had sold her some top of the range boiler which had the most complex set of instructions ever. This was needed as I was exhausted, camping in a chaotic flat in sub-zero temperatures. Ditto a couple of Asian bank managers who bent over backwards to sort things out telling me I was right to be looking after my mum. NatWest were lovely both my mums branch and the branch nearest me, with duty managers sharing their family experiences. Others less so.

(My mum was the ultimate carpet bagger with Building Society accounts everywhere, some now swallowed up by banks. I have a cardboard box of old passbooks and cheque books.)

Where I could on pensions, banking, insurance and utilities, I typed up letters and got my mum to sign. Self Certifying copies of the POA document takes ages, even if I wrote the text and she just signed each page. Having a solicitor do would cost a lot. Hence easier to take the original into bank branches, and no incentive to send a copy off simply to have a conversation with a utility call centre. Overseas ones were worst with the person on the other end of the line simply sticking to the script unwilling to consider context. (TalkTalk was the worst.) In the end I simply pretended to be my mum.

WBN. Again mean, but when my mother tried to change her mind on something important, I more or less told her the discussion was over. She had agreed and it was too late to change her mind. This inevitably caused upset, though she could accept I was telling the truth. Now though she is where she needs to be, and things are calmer. I provided her with a briefing note (which she read quite a lot till she lost it) which explained what was happening, eg to her car, to her old flat, medically, etc, and why we had come to the various decisions. I have now also given her, and me a bit of a break, which I think will help repair the relationship. Having her in the right place means that low-level anxiety has gone. It also means that she is no longer struggling to keep on top of things. I think this was really stressful for her.

(Sorry again it is really long. I am still processing a very intense few months.)

That's extremely helpful for those of us who haven't done all the finances yet Needmoresleep. It's going to be a slow process totally taking over Mum's finances I think as she's not prepared to just hand it all over but she did give me her post today to deal with. I can only imagine what you've been feeling recently.

A briefing note is an inspired idea. And with the copies it's ok for us to write the sentence on each page and for them to sign it ? I did try to get a copy from the OPG but they just refunded the money.

Memory nurse came out. Aricept stopping (she 'd already stopped) and once she stops feeling ill she's starting on Galatamine instead. If she's still feeling sick Tuesday/Wednesday next week I have to take her to GP. Apparently I have to put boundaries in place. I was explaining the DC's were getting neglected . Good thing is DD overheard me and does know I'm trying to get help. Problem is I can't insist she's moving as my Brother won't be on board unless she wants/needs to.

Some really tough things to read for me, when I feel I have all of this ahead of me You all sound really amazing. My fear is of being inadequate at caring for my parents. I feel selfish because I know I don't want to do it (but do want to because I care about them) if that makes any sense

I massively don't want to do it and have had enough. I'm happy to do medical appointments, finances and will speak to her daily on the phone . I don't want do anything else and am utterly pissed off with it all if I'm honest and on some level very resentful she refused to deal with high BP and cholesterol.

When I was DD's age, my brother was same age as DS. Mum used to bugger off to relatives abroad for the whole summer as her life was so stressful apparently and she had no sick relatives to deal with. That's another thing I'm resentful about. Oops, sorry, it's all coming out now.

:)

It's ok. There are things I can't put in print ...but.

Same issues here, both with mother and brother. I decided that I wanted the family dysfunction to end with the current generation. A friend suggested that at lot of women of my mothers generation were frustrated and angry. You might be bright, and in my mother's case educated, but you still gave up a career on marriage.

In a way it makes things easier. I can do the practical financial and medical stuff and am not expected to provide emotional support. But sorting through a lifetime of stuff, plus her uninhibited outbursts and forays into the world of the past, have dredged up "stuff". Oddly I have found it healing.

On Lasting Power of Attorney, I dont know if it is OK for me to write and my mum to sign, but have done it like that. Lets see if DWP accept. With banks, just take in the original with passport and driving licence. They photocopy and certify and set up on their systems, either using a paper form or on-line.

I picked up a mail redirect form from the Post Office and got my mum to sign. So everything comes to me first. Not sure if she really realises but it makes it much easier. I can just get on with those things which my mother has lost the capacity to do, and she has essentially forgotten the battle for control.

Thanks, feel a bit better getting that out. Banks are both done now. I'm going to leave other things for a bit and then come back to it. It's the emotional support to someone who isn't entirely rational that I find so draining. And am dreading sorting all the stuff.

Very interesting about the being frustrated and angry. My career went down the pan when I got pregnant with DD just as I was about to start a funded Ph.D . She has dyspraxia and I didn't make it back and set up a small business which was intended to take me through to DS being more self sufficient which he now is. Then things were increasingly going pear shaped with Mum so my brother employed me very part time. At the moment I can't even do that. I'm 43 and have a sense of my life slipping away. I had just been looking at the local job situation as was thinking if I got a job someone else would need to deal with her. That's not good really is it but I'm not going to feel guilty as suspect I'm not alone.

In a way I'd love to go back to research though that ship has firmly sailed. If I did it would be something regarding the Psychological Aspects of caring for Dementia patients. As I type it I'm actually wondering whether once I've got a grip of myself, I ask the Memory Clinic if they have any research projects on the go I could help with in the future.

I'm very sorry, I'm still splurging

Hi wynken. It s not all over, please don t give up. Try and turn even this most difficult of situations into an opportunity for yourself. You got to PhD level before, you can do it. If it means writing a fab research proposal on Dementia carers- go for it. I ve been in counselling for a year and if it s only taught me one thing is that it s OK to want nice things for yourself. Dad rang just now, saying you're coming over aren t you. I said no,sorry I ve got things to do ( that is in fact, go to my favourite 1930s swimming pool and take DD1 to a birthday party on sunday). I don t even feel guilty. I ve done so much for him in the past 6 years, I need some nice things in my life not just constant work and worry. He ll be OK.

CabbageLeaves, you could be me. I really really don't want to do this, the trouble is, you see stuff on the news and read in the papers, and a poor guy at work has experienced, abuse of elderly relatives by the people supposedly caring for them. Mum cared for me when I was helpless and annoying, how can I leave her to people who may not look after her? BUT I would feel so much more kindly towards her if I didn't have to do it all.

My brother has power of attorney, lives 3 hours drive away, and won't spend any money on her care. If I ring and ask him to come over for a day to give me a break, or if I want to go out somewhere, it's a big drama. I would be happy for carers to go in and do the caring with me doing cleaning, washing, tea and chat.

As yet, she is independent enough to stay in sheltered accommodation. I was fairly horrified to learn the current care package is only to last 4 weeks. My great hope is that they will decide she needs a permanent package in place and then something will have to be done. I refused to do some things yesterday, because I don't want to get involved with too much care giving. I feel terrible, but I want the team to get a true picture of how she is.

Sorry, that was a bit long. Diversion tactic to delay going round there this morning. Oh dear, what a bad woman I am.

I recently cared for an elderly neighbour. Her deterioration from independent to death was weeks. It did focus my mind somewhat into what I might physically be able to manage in the future. I work full time. I really don't know how I will manage

Found you !!!!....I posted in chat last night and was guided over here by a lovely MNetter.

Dad was "officially diagnosed" yesterday with early "A"
My head is still in a spin and I need to take ds to a party so will come back later to post more..(think I am going to be on here lots !!!)

Cabbage and others,
Have you read
The Selfish Pig's Guide To Caring: How to cope with the emotional and practical aspects of caring for someone: Hugh Marriott

Really worthwhile. It discusses the sorts of things people feel they can't discuss.

I hate to say it, but simply driving down every weekend to keep an eye on my parents when my father was terminally ill four years ago left me exhausted. I ended up getting run down and it took months to get over. I therefore leapt at the chance of voluntary redundancy (public sector cuts) a couple of years back, knowing work, kids and mother was one juggle too far. Part of the package was a career interview. The advice was strongly not to seek other employment whilst there was a crisis looming.

In my case my mother is wealthy. I even feel guilty writing this, but as a POA I charge, albeit reasonably modest amounts. Her first idea was to use a solicitor who would have charged a fortune, so she is much better off paying me. I did it, not so much for the money, but to help reduce potential resentment I might feel, given the bulk of the burden has landed to me. I did not see why I should also be the one to have to pick up costs (petrol etc) and suffer loss of earnings, as well as committing time and energy. My mother understood. The argument that worked for her, was that I needed to contribute something to my family who had lost out as I was effectively absent for 3 months. She is very much part of the generation who believes a wife's duty includes having a meal on the table each evening. To her it was astonishing that my husband had allowed me to prioritise her needs over his, and had been willing to take over caring for the kids. At the back of her mind, I suspect, was a fear that he might put his foot down.

I found it difficult to be assertive especially in a family context. Everyone's circumstances are different, but you are right to look ahead and to consider what boundaries you need to set, in order to achieve the solution that works best for everyone. I could not have made it work if I was trying to balance with f/t work or if I was seething with resentment.

Thanks everyone, I'm sorry about. Yesterday, I was having a meltdown. Poor DH yesterday's said yesterday that he can't see an end to it and I knew I had to do something. We had Mum having a hip op plus my Dad and MIL having cancer diagnoses within a month back in something like 2005. MIL was abroad and hang on for 2.5 years and that as its own particular brand of hell. Thn just as we were getting over that we were realising Mum was getting ill.

I've said to my Brother we just can not do this anymore. He's ringing her this afternoon and he's come round to the idea of the flat, though he wanted to give her a break before mentioning due to the roller coaster of the last couple of weeks. But realises we've got to act. I've told him to hold off talk of respite, big up the flat which we're seeing Tuesday and try to get her to think it's her idea to go into it. It isn't her fault this is happening and I don't want her coping with her diagnosis plus feeling responsible for my family falling apart. If she won't move in then we will have I force the issue of respite.

I think it was the Memory Nurse asking her what she'd do if she was scared in the night and her saying she'd ring me which tipped me over the edge. To those of you a bit earlier in the path then me, be very careful. I have always jumped into solving problems and I should have stepped back a bit. Lesson learned. Operation get my life back, though I know it's not the time to job hunt if I'm honest with myself.

That looks like a great book needmoresleep

I have experience of caring in a family context. As a child we had 3 grandparents move in, become bed bound then die ...next one would move in.... My mother was a saint. I know I am not

Good advice from both of you about managing it to everyone's best interests