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 Welwyn and YouveCat. I feel both saddened by your stories and privileged to hear them.

My mother has now had her second Aricept appointment. No big deal. pulse read and dose increased. My own take is that her memory has not improved but her ability to work with what she has, has improved. Probably not drug related, but now things have settled down and she is getting used to the fact she is having to have support, she seems more willing to acknowledge and accept the memory loss. If the drugs do delay further deterioration it will be a real blessing. Things are sustainable as they are, and with a routine established, my mother is slowly regaining some independence.

(And though our relationship has been difficult I cant help admire her courage, as she manages to walk some distance to her church and to take the bus to the nearest shopping centre.)

This has enabled me to catch up with some maternal duties. Despite being given a league table of Universities and links to book open days, my son had only managed to get along to the one which is within walking distance of our house. Not what DH considers "leaving home". So DS and I had a bit of a half term road trip starting from my mum's and taking a wide loop to visit three campuses in quick succession. All very different and I would not know where to start to choose. Luckily not my decision.

Some of you have it really bad at the moment have some from me. Had to fill in mothers ESA form again yesterday after dwp lost the first one I sent in with all her original documents . But it has been sent again so hopefully we won't have to wait too long.

How are you and parents doing ? I'm so sorry for what some of you are going through. It's only as I got older that I've realised that there aren't really words some of the time so I shall do as Topknob did but seeing as it's Friday here's some .

Went to Mum's yesterday and picked up the bank card and pin number that she handed over without a fight. She is currently on far more of an even keel but has been thinking about the future. She thinks in the not too distant future she'd like to move to sheltered housing as she would like to feel more part of a community.

That's fine but I'm worried. I guess really she should go to extra care housing but I can't find any to rent so she would have to buy. Which is fine but with the Vascular element she can be very up and down and I know that potentially she could deteriorate fast. I then worry about not being able to sell her flat plus having care fees. My brother and I have a plan for the care fees but it does involve selling her house which would sell easily.

Or she goes to normal sheltered with us raising money from her house so she could move in straight away givi g us time to sort her house then when it's time for a home her current house and sheltered housing flat could be let. That's fine and where I was until I read online about some people having problems when the flat manager knew people have dementia with one even saying it was against the conditions of the lease. And I do worry that she could have two moves in quick succession, the stress of moving is quite likely to trigger a TIA.

Then I though what we need is somewhere which does Assisted living flats and has an onsite specialist Dementia home with assistance with fees if all goes pear shaped. Well I managed to find one, down the road from where we sodding moved 10 years ago. It's a charitable trust which I've been familiar with all my life as they had a home up the road from where I grew up. Dad has already said if he ever needs to go anywhere he'd like to go to the flats they have near him. He's not that far from the one I think would be good for Mum and I have to consider at some point he'll struggle to get down so I will need to make more trips up anyway. I could stay with himor have friends there who would put me up and would be lovely to see more regularly. Am I nuts for even considering going to look? Sorry, that's long.

Hi I found this thread and am in need of some advice if possible.
My DM had a stroke a year ago but is living 'independently' with daily support from a close friend. The friend is relocating to be closer to family so will longer be able to help DM so it looks like I need to move her close to me as she is currently a couple of hours away and with young DC I can't get there much.
DM has huge communication problems following the stroke and can't write or use a keyboard as although she understands and can read etc its a one way thing.

As far as I know she gets full DLA and is in a private rented property paid for by housing benefit.

Unfortunately we are not close and I know very little about her financial circumstances. Her friend currently deals with all this for her and pays bills etc weekly. She has been in trouble financially several times and has debt agreements in place.
She has speech therapy but apart from that I don't think SS or anyone I involved. When she was released from hospital last year she had carers provided for 2 wks, proved she could microwave a jacket potato and was deemed able to cope.
She has multiple health issues in addition to the stroke and seems to tick several boxes for vascular dementia although she hasn't been diagnosed. She has also been depressed for ever and I'm not sure suggesting to her that she might have this would be a good thing.
To apply for sheltered accommodation locally I need to fill in a big form but don't have most of the information needed.
I just don't know where to start or where to go for help and advice. It seems minor when I read other posts and you are all dealing with some awful stuff.
My mum is a bit like a big toddler who can't talk, she's very different to how she was pre stroke and I know she needs to be kept an eye on and help with cleaning, shopping etc in fact she never goes out on her own as she would prob get lost or run over so I will be really involved in her daily life.
Please if anyone can give me a clue where to start it would be so appreciated. Trying to help someone who can't tell me anything is not easy and I just don't know where to turn.

Wynken - no don't think you are nuts to go and have a look. I have reservations about "sheltered housing". I think some of them are good, but some of them the sheltered aspect is very tokenistic. I think somewhere that has a dementia element to it sounds like a much better long term plan.

Lavendersblue - sorry to see you here too. Could you have a look at something like Wynken is thinking with the dementia element? It sounds like your Mum may need more than just sheletered accommodation. Do you know if Social Services did an assessment after she came out of hospital last year? I'm no expert, but I think SS should have done or an assessment to work out a package of care.

Wynken, I'd def go and have a look and chat to them.

Lavender, I think your first port of call is your mums GP to get them to organise a referral for a needs assessment, and maybe talk to a carers centre local to you to find out what is available locally - they should be able to help you with all the forms.
Would your mum be able to tap an IPad? There are communication apps designed for people with very limited dexterity

My dad is phoning a carers centre local to them to ask for an outreach worker to come out and chat with him for support. A result! DN and GP coming out to see mum as shes vomiting today and not looking well.

Thank you CMOT and Post for you replies. The trouble with mums communication is a mental one rather than a physical one as she does have limited use of her hands. It seems that although she can read and (we think) understand information, her mind cannot process outgoing information so in her mind she's saying or typing what she intends but it's gobbledygook. Does make things tricky and she finds it do frustrating. She was a very intelligent well read woman and most of her social life was Internet based and if course she has completely lost it all, no friends and no way of making them.
I agree that the social services input was inadequate. It literally was that she can wash herself and cook z ready meal in the microwave and that's all she needs.
The biggest problem really is that she doesn't seem to be aware of her limitations. She can't communicate with strangers etc or use a phone, is probe to just crossing roads regardless of traffic and just kind of helpless. In my youth she would have been called 'simple', it's very hard be ause it's not my mum. Much as we didn't get on at all I would give anything to have the old boot back instead of this frightened creature.
I will try and talk to her GP and see what he can do and see if there are any support services locally. She can't stay where she is it just won't work so I need to move her somehow. Where we are there are very few ground floor flats available to rent privately let alone available to people on benefits.

Lavender - sounds like the stroke took out the expressive function of your Mum's brain. Same as my Dad. Dad was running his own business 18 months ago & now he is a giant toddler. You can't even ask him if he'd like tea or coffee - you have to ask him a question to which the answer is only yes or no. To be honest Dad couldn't even microwave a meal for himself because his short term memory is shot as well. He'll get up to start going somewhere and just in the time it take to get up, he has forgotten where it was he wanted to go. Heartbreaking.

We have stopped thinking that inside the intelligent "Dad" that we knew is somewhere trying to get out, but have accepted that his function & ability is permanently impaired. It has stopped all of us trying to "over-stimulate" him with our efforts to get him back. We still do as much as we can with him, but try to be mindful of what this new person will be able for and find some pleasure in.

My Dad is 77 though, so if your Mum is younger it is possible she may come back to herself more.

My mum is only 63 and up until a year ago would happily have laid claim to every illness and infirmity going which is partly why it's so strange now. She's actually more mobile because she's forgotten so many problems she's claimed to have in the past but now she genuinely is disabled it's kind of pitiful. I'm actually fonder of her now because she's a different person but the responsibility is scarey long term, women in my family live to their nineties and I don't want to spend my middle age looking after her, that makes me a bad person I think but it's how I feel.

I do understand how you feel. I feel like I am the parent now to my own mother. It is frustrating some days. At times it gets abit much, and I have a wobble. I have dh, 5 kids aged 15-8, one has asd and I am having to sort out his secondary school and various appointments. Plus run my own small business and deal with all my mums stuff and appointments.
Don't feel bad xxx

Thank you topknob, I think it's just knowing that we are really at the beginning of a probably lengthy journey and its not going to get better just harder. Glad I found this thread tho, some amazingly strong people on here.

I don't think it makes you a bad person Lavendersblue, just a totally normal one. You've summed it up very well about the beginning and it getting harder - who wouldn't feel scared faced with that and want to run screaming faced with this ? I had days after diagnosis where I'd think I can't deal with it but there isn't actually a choice is there ? Therefore worry, fear, resentment all seem like perfectly rational responses really if you think about it.

DS was off for the day with a friend so decided on the spur of the moment to take DD to Bristol. Part of me had in the back of my mind that I could see how hard I'd find the trip. Glad I did it, traffic meant it took over 3 hours on the way up which certainly focused my thinking and my googling. I have now found something closer to home, about 40 mins easy driving. Close care flats with nursing home which copes with Dementia on site. Definitely will look at that one.

CMOT, your mother's blackouts sound like my DM's. Impossible to rouse, then she says her mind goes to mush and certainly there is a sharp further deterioration. But so far they have not happened when.she has been on s heart monitor and we are given diff reasons everytime and there is no evidence of. TIA even though that is,what it looks like.

Bizarre.

WBN, one of your issues is that you are facing not only dementia but other health issues. Managing the first is hard enough but managing the others around the first is harder.

In terms of dementia the solution presumably is to identify the extent of the disability and work out what support is needed. The first issue then is to have the person accept the problem and agree to support. This is really difficult but it appears you are some way there. Then it could become some form of options analysis, which should include the money, your time and support from social services which might be available.

I provided something like this for DB, though he failed to respond, which included a care home (too early), carer support in her own home (would she like someone in her own home and how sustainable would it be into the longer term), and different forms of supported housing (here 24 hour warden support was essential, however without being sure that she would settle/manage buying a flat was a financial risk).

I would be tempted to tell her you were looking at options and in order to do so you need to be absolutely sure of her finance....could she hand over the paperwork.

Then ask everyone you know who goes to a lot of places. Professionals such as SS and the memory service wont be able to make recommendations but could suggest places you might visit. Try the GP, the vicar/priest, others such as the physio if she has one. A British Gas engineer was able to tell me that he regularly visited the place my mother now lives in, and that it was lovely and the staff very kind.

In terms of distance I don't have a problem with 150 miles each way if it allows my mother to retain her social networks. However my mother's general health is really good and we were never that close, so she will not expect to see me that often. I can time my visits to avoid traffic, and often combine it with something else. Not least I have joined the National Trust and am planning to visit everywhere on route sometime in the next year.

However if my support were needed for other health issues, including visits to doctors and hospitals and also making sure my mother was in for routine visits from community professionals, as well as predictable emergencies, I would want her to be closer. Also because my mother's health is so good, her prognosis is long; when it was all at its worst I felt she would outlive me. (I understand completely what Lavender is saying.) Your mother has a much shorter prognosis. DC are also teenagers and so can be left.

It is great your mother is talking about a move. You should encourage her to move "early". The more skills she still has in place the better she will be able to settle, adapt and make new friends, and so the better the quality of life going forward.

Best wishes to all....

Glad I found this thread.....my Dad died of dementia with Lewy Bodies in 2010, Mum is about to have a mini memory test and appears to be hallucinating (like dad did) so it's brought it all back, I am so afraid of the future and the long haul we all now face.

Skyblue.. xx

Really sorry Skyblue. On your other thread you mention antibiotics - she's assembly got an infection. The psychiatrist who saw Mum was talking about the affects of delirium after infection which he said could last for some months after the infection had gone. Am wondering if that may account for some of your Mum's current problems.

Thanks Needmoresleep , lots to think about. My brother when he heard today that she was talking about sheltered housing said to stall her and see what she's saying in 3 months time. As he rightly pointed out she keeps changing her mind. We both feel two moves would be too much. I think the stress is likely to kick off more TIA's.

After a very good couple of weeks I rang her this evening to tell her she's now a Great Great Aunt. Very surreal conversation that was I can tell you. It finished with her saying 'but my tennis match has finished now' after demanding to know what DH thought of all these babies and who was it who'd had the baby again? I gave up at that point and decided my hormonal 14 year old was a safer bet conversation wise, even if she was being all passive aggressive about the ice cream and disgusted her orthodontist appointment clashes with drama and a science test. Clearly I am supposed to be psychic and know these things.

I refuse to stress though. The sun is shining and I spent hours at the allotment being normal, plus I'm going back to work next week (2 days a week, well that's the plan but as we all know things change in Dementia Land and a week is a long time).

My mum lives in kind of sheltered housing already, I moved her in a year ago. It isn't warden controlled as such but she has pull cords everywhere and an intercom to contact someone if she ever needs to. It is for over 55's and whilst she is a 2 minute drive away, it does offer some reassurance.

Had mum over for dinner today, thought it was going well until I went to drive her home and she couldn't work out how to open the car door (from the outside) or put on her seatbelt. These are simple tasks !

Wynken, good luck with going back to work xx

Thanks Topknob. Last time I tried I managed one day before last crisis. I guess that's the unpredictable nature of the Vascular element.

My Mum's not great with the seatbelt and admitted the other day she can't order things online anymore (thank flaming goodness for that ). That's nice your Mum came. Mine won't come if the tennis, F1, football, skiing, cricket, olympics and more I've forgotten is on. Which doesn't leave much time.

She should join mine. Whatever the problems, she was not able to forget yesterday was Derby day, and was set up for a day in front of the TV.

Much simpler obviously than remembering birthdays or even grandchildren's names.

I get the feeling we are all sun-downing on a Sunday night. Lets hope next week is a good one.

Think its time for a all round.

Mum much worse after her turn on Friday and has been wandering the house at night, drinking undiluted squash, and being generally horrid.
Wah. Looking at care homes near them with a view for respite.

In good news though, the carers centre were fabulous on the phone to dad, have got him to get Attendance allowance forms and will come to the house and fill them out and chat then about services and support. I luv them

oh yes remembering grandkids names, she failed that at the memory clinic. I did try so hard not to get annoyed with her about the seat belt, but it is a regular thing with her, I pick her up two/three/four times a week and she can't do it...sometimes I give in and do it for her, other times I will wait until she works it out..is that mean? Funny thing is she is able to phone me every sunday every 10 mins until I answer about coming over for dinner? some days I have up to 10 missed calls :(

CMOT :( good news about carers centre though xx

Morning all, sorry to hear your Mum is in a bad way CMOT.

Another gruelling visit to parents this Saturday. Took Dad for a walk - he is getting on a bit better with the sticks. Tried to converse, but sometimes he can't even remember what you were talking about if the sentence is too long - so sad.

My brother was ill, so DCs and I did vast amounts of mowing. It was comical really, as DS is the only one who can start the mowers (2 really huge petrol jobs with scary pully things to start them up), so he and I did an hour or so and then he got really tired, so DD (who is a tiny weeny sparrow of a child) said she'd help, but DS still had to keep starting them every time we had to switch off to empty them. It was seriously hard graft.

Did my weekly weed through the mountain of post and chucked 80% of it away. Am hoping that at some point the catalogue people will realise that nothing is ever ordered & will stop sending stuff through. Haven't got the energy to start emailing or phoning them to get my parents names taken off the mailing list. Tried to deal with the other 20% but Mum gets so stressed about it, that I couldn't manage all of it given how much time spent doing bloody mowing.

Then we had the horror of dinner. Mum has got slightly obsessed with feeding Dad & spends too much time cooking things she thinks he will enjoy. Needless to say that the things she thinks he will enjoy are fairly repellent to the rest of us. Stew with vegetables cooked to mush. So, we sat down to watery pork stew, with boiled potatoes, cauliflower, swede & broad beans all horribly over cooked and lacking in butter or any kind of seasoning to make them palatable. The DCs were looking at me with accusing eyes of horror. To top it all off, Dad was really tired & kept saying "Disgusting" and humphing, coughing it back out & dropping bits. So Mum had lovingly prepared a dinner that all of us hated - except the DCs & I pretended it was lovely!!!!!!!!!!!!!!!!!!!

I hate the bloody ridiculous farm house they live in & I really, really hate mowing. I hate these exhausting weekend visits & I hate that I have to make the DCs come with me.

GRRRRRRRRRRRRRRRRRRRRRRRRRRRR. Sorry, had to get that out of my system.

PostBellum, sounds like you need a cuppa and a big slice of sticky cake. Is there not a possibility of employing someone to do the mowing?

Thank you CMOT. I have a huge mug of cup of tea at my desk now!

Going to speak to brother about trying to get someone in to do more mowing - as he can speak to Mum about it, she won't have it from me.

My brother has spent the last 3 weekends solidly mowing or doing DIY around the farm - I think that is probably why he is ill, because he is knackered. Mum has a man come in who does 3 hours a week, but I think during the summer she needs to increase that - or sell the place. I so wish she would!!!!!!!