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40mg a day Veronica and she doesnt sleep now courtesy of the donepezil - dear god
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No Jude they make it with cinnamon which i hate. They put that in everything sweet. My rice pud is always home made and i use a lot of nutmeg on everything and that is easy to find.
Jude watch out huge amounts (How much) steroids make some people totally psychotic. It will probably also increase her appetite and keep her awake at night. good luck with that optional sleep.
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Lets not forget HP sauce and salad cream, golden syrup and do americans eat rice pudding with nutmeg?
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Oh you lot make me smile and that's such a good thing. Mum is grumpy as h*ll but I am leaving her to rest as the doctor suggested. Oh and I 'broke' her bell this morning - can't think how that happened!

She is now going to be on a huuuuge amount of steroids - the hospital say they wont do a biopsy as there is and I quote 'no point ' at that age - OK so when you get old you don't matter none....no comment ..... so we shall see what that brings - utter misery I suspect!
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CM someone is going to ask you what Detol is. One of the many things I miss and practically unobtainable here except on Amazon at great inflated cost. Then there is treacle, marmite, bovril, horlicks and bisto.

Good idea in principle to have the vet give Tex's Mom the once over but he'd probably tell her to get a halter and a lunge line and have her trot round a few circles. Probably kill her but that might solve some of Tex's problems come to think of it. if not put her on a diet of a handful of grain and only two flakes of hay and a grazing muzzle when she goes out.
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Tex, can't the vet give you a quick consult while he's at it? :)
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I can't believe you can actually get an MD to come to the house. I can only get a vet to the house about the horses.
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Be careful what you wish for, hun.

I love Jeanne's question about ironing. I feel much the same about hoovering "what iz ziss vord hoovering I not know what iz dat…"

By the way, once mother was hemiplegic and getting through the laundry faster than I could buy it, let alone wash and iron it, I was driven to find a laundry that would collect - and I am delighted to say I did. It's not as expensive as you might think, especially once you factor in the cost of water (if you're metered), electricity, detergent and Dettol, and it could give you an extra few hours' sleep time a week. If you're closer to civilisation than we are you might get White Knight to take you on, but ask around.
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Jude you know my Mom used to fall for no apparent reason that I could see. In fact the very last time I remember going out anywhere with her we were walking one minute and the next minute she is laying on the pavement. I was right behind her, watching her carefully. I have no idea how she fell.

Unfortunately right after that she deteriorated significantly. After age 90 falls can be catastrophic I guess. I always blame myself for not watching her carefully enough that day.

I hope things improve with your Ma.
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Nope Veronica no arthritis but she does and osteoporosis and the bones are crumbling that much we know but the doctor says this is more localised so needs further investigation - I think he is worried it could be what is causing many of her problems - shame it wasn't picked up ages ago

Jeanne bad bad bad ironing it what I do so that the pure cotton sheets are pristine cos there is nothing like sleeping in fresh clean IRONED sheets and nothing worse than sleeping in wrinkled ones

CM we sure are lucky and I adore this doctor he is just so switched on to the ways of the elderly and yes they give heavy does of steroids - thats going to be fun because it will destabilise her IBS apparently and is crap for osteoporosis too - I am, hoping they find it is something else!
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Jude, I'm following your story and gettin' it. But I have to ask one question: what is "the ironing." Maybe it is cultural thing.

Hang in there, and take every option to get some sleep! I was sleep-deprived for 10 years, and I'm sure making up for it now!
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Hopefully you gals are all safely asleep in the UK. Just one question Jude does she have and arthritis in her back. Could be she has some discs being squeezed.
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That's actually quite good news, Jude! A heck of a lot better than some of the possible alternatives, anyway (sorry, am I making things worse?). I believe they usually whack some steroids in and hope that, God willing, it will gradually go away, don't they?

Are we lucky or what still to have GPs who a) will come to the house and b) have seen it all before?
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PS I have come to the conclusion that SLEEP IS OPTIONAL!!!!! If I get the option I sleep!
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Jude, at least you're moving forward. Hang in there; this doctor sounds like a keeper - wise and savvy.
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CM she is a narcissistic old %^& and no she just wants attention. I spend probably about 4-5 hours a day actually sat talking with her. Additional to that I have:

washed
massaged
toileted
cleaned the house
done the laundry
the garden
packed a few boxes for the move
updated on here (this is now an essential tool in my day)
done the ironing
fetched bits from the shop or chemist or both
attended appointments to make sure she tells them where she is at as opposed to her usual lies
changed clothes that have been soiled and rewashed them
emptied commodes ( I would say I could do that blindfold but perhaps not a good idea!)
sanitised everything she manages to touch with dirty hands (dirty as in not sanitary as opposed to dirty from dirt

I dont want to spend any more time with her.....by now it is me time and by Jingo I think I will just go play some Simon & Garfunkel and chill so nnite all xxxxxxxxx
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Right well we have a potential answer Temporal Arteritis - yeah I thought he said arthritis too till I googled it. She has 80% of the symptoms but then so do most old people to be fair BUT and it is a big BUT I swear if she says to me my head hurts and then says to the doctor its not too bad but Judith likes to make a fuss one more time she wont have to worry about a headache she will be lucky to have a head!!!!! Of course he hadnt been gone 2 minutes when she started up again but I have a canny doctor he stood by the open window so he could hear for himself how she is when he isnt there. He bounced back in and was very stern with her.

Mrs XXXXX you either have a headache or you dont have a headache now which is it. Well of course she had to say she had one then but when he examined her it was very clear that some of the pressure (light as it was) was causing her intense pain.

So now waiting on an appointment for a biopsy hey ho just another day in paradise
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Hugs to you Jude.
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Is she trying to slide onto the floor because she reckons that's the safest way to make it across the room and she's bent on escape to somewhere or other?

She's on anti-clotting medication, is she?
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CM the doctor said and I quote - I dont know what is causing this but there is nothing showing on any of the tests she has had and she has had the lot. MRIs CT scans you name shes had it. The big problem with blood is that she is so damned tight she wont even give blood up! She has had TIAs before and so it could well be those - she's got erythmia but that is all re the heart.

Mind you despite all the worry I have just gone into her very very quietly (OK OK so I am a snoop) and she is trying to slide on to the floor and I mean she is trying to slide on to the floor. I said what are you doing for heavens sake mother to which I got a tirade of abuse for being just what I was ...a snoop.

I just don't know now whether she fell or slid and then used her hand to knock something over that brought me running - Jings this is going to be a nightmare week I can feel it in me water!!!!!
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Jude I'm not sure what chronic conditions your mother's already being treated for? But to line up the usual suspects with vascular dementia, you could be looking at a cardiac event, could be a series of small TIAs, could be a small series of small strokes, or if she's already on antihypertensives and the like and her balance is suddenly shot to pieces it could be a further deterioration in her inner ear - I can't remember if it's the beta blockers or the ACE inhibitors which are ototoxic, could be both. Errr… causes of postural hypotension anyone? Yikes can't remember. Dimly recall she ought to have her Us and Es checked - urea and electrolytes. How cross does she get when the medics take blood?

If GP came out for a home visit, he probably won't have done an ECG, right? The question is, whether there's any point hauling her off to your nearest A&E or walk-in centre to get one done, considering you'd then have to have a next step after that in mind. What investigations does your mother have routinely?

It is worth looking over what she's on thoroughly, because although obviously you don't want to subject her to exciting new and invasive treatments it could turn out to be a small and easily-corrected technical hitch that you wouldn't want to miss. She's nothing like at the palliative care only stage, is she? So don't let that GP get away with being idle or unimaginative.

Go easy on the exercise until you've ruled out cardiac events, I should.

Did they ever get to the bottom of what was going on with her last year?
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Jude, have you spoken to her doctor? I'm wondering if she might have something like Non Pressure Hydrocephalus?
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Hey Jude,
Your post caught my eye, because my cousin also has Vascular mixed with AD. I have seen directly how they can go downhill quickly, not just with the memory, but the physical abilities.

My cousin started with a fall when she was alone and she broke her wrist. Soon after that I had her placed in Memory Care, due to her inability to care for herself. She was on a walker. Within weeks, she had fallen and fractured her spine. She later fell numerous other times and fractured her hand. She lost most all of strength in her legs, plus has extremely poor balance. She can stand up to get onto a scales at the doctor office, but it's very slow. She is able to propel herself around with her feet in the wheelchair though.

I would strongly caution against allowing her to move around without assistance as a fall can occur and they can bring horrible, painful fractures. That limits them more. When the patient is falling down every couple of days, steps need to be taken to keep them safe. It's only a matter of time before they are really hurt.

My cousin in a wheelchair only now and gets assistance getting int and out of it. She is also completely incontinent.

How long since your mom was diagnosed?

I have witnessed setbacks lately and I can see that her health is not well. Weight loss, even when they are eating well is another thing you might see. They may actually show that health issues are under control according the the lab work, but there is something in the way they look that just lets you know that the condition is progressing.

I wish you both the best.
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Jude, thanks for your response and insight.

Well, if she topples over that's a balance issue, perhaps a combination of strength and stabilization if she has ear problems which don't need to be treated, or even something like dizziness or vertigo.

But that raises another issue with your comment of lifetime balance issues: weak ankles. I remember wobbling when ice skating, and my ankles still wobble if I don't do ankle exercises regularly. That can be helped but if she won't do exercises, the only thing I can think of is to get her fitted for one of those thick velcro ankle supports. However, and this is a big caveat, I don't know medically whether that would make her more dependent on supports.

Maybe there are some braces that would help weak ankles but I have a feeling she wouldn't wear them.

I don't suppose that if you did ankle exercises or even some balletic ankle moves, such as releves, that she would become interested and imitate you?

What do you think is the cause of the throat and leg backs burning sensation? I was thinking perhaps she had a sinus infection with a lot of drainage that could cause throat irritation and balance issues, but I don't think that would affect her legs.

I guess a doctor visit in in order; the burning could be something we don't even think of and it could be affecting her mood and hostility toward you as well. There are some thoughts mingling around but not connecting so I can't express this very well but I keep thinking burning, neuropathy, pain, favoring one leg or the other, loss of balance. I guess my neurons are ready for a nap so they're jut not connecting.

Wish I had better insight into this issue.
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Jude, silly question but when doc checked her hearing, did he check for an inner ear infection or allergy flare up (fluid in ear)? When my mom got those, she would lean over in her chair and fell multiple times. Of course, it was never her - it was her *darn* cats. Hugs anyway.
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PS Thank you all so much for relying xxx it means a lot
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If she tries to pul them up she topples over so for now its not going to happen

She refuses to do any exercise for more than about 1 minute. She has been told to stand from sitting five times one after the other 5 times a day - wont even do that and if I try to get here to do it - well lets just say I make sure there's nothing she can throw nearby

I have a pedaller - she said why don't I use it since I'm so lazy and fat - she's right I am fat (I have a diagnosed eating disorder) but hey I'm also not going to stand there and take the abuse either. I have tried everything - even put her commode two steps further away but this change is really quite sudden and her depression has increased 10 fold as a result - if she was miserable before then you cant imagine how much worse it is now

Grins at Tai Chi - my goodness that's foreign - I would have to call it something else! please don't shout at me for that my mother is quite xenophobic but that was the norm in her day

She drinks loads each day because I nag until she does, she has 3 meals a day admittedly only 2 with protein but I make up the difference with milky drinks.

She has potatoes every day in one form or another and has bananas and egg custard regularly as a dessert and celery soup home made about once a month so I cant think it is hydration potassium etc. She has no problem urinating or pooping (for sure on the latter!)

But exercise she will not do I keep telling her use it or lose it but nope nada.

Everything is as it has always been except she is miserable as sin and can't be allowed to walk because her legs give way underneath her.

All the falls seem to occur going to or from the commode and she has a walker we have grab rails to cope for everything but she has just seemed to have lost all strength

On thing I have noticed is that her hearing has diminished but the doc checked that and said nothing needed to be done and she can hear just not as well as she used to. To be fair she has never had brilliant balance - unable ever to ride a bike even as a young woman - dad said she was a danger on the road in a car or on a bike. She has no spatial awareness to speak of.

one thing she is saying is that the back of her throat feels like its burning and her legs are burning now I cant massage the throat but I massaged the legs today and that seems to have eased them a bit. I just think this is a step down on the ugliest of all roads - I have said it before but I will say it again I HATE DEMENTIA
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Forgot to answer you query about falling - yes, it could be a consequence, but as I recall from a neuro lecture at one of the Area Agency on Agency seminars, hearing, sight and balance are the triad for fall risk. If either sense diminishes, the others must compensate; if they can't, fall risk can increase. And obviously muscle strength affects balance.

Does she have a walker? Do you have grab bars throughout the house? Do the falls occur at similar times, i.e., in the morning before she eats, or some hours after a meal? Any patterns to them or are they random?
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Jude, I'm so sorry to read this; I know it's been a long journey with your mother.

Can you tell whether her inability to pull up the Depends seems to be sourced in weakness in her arms, or confusion about what to do? Sorting that out might help determine whether the issue is mental or physical.

If the latter, I don't recall if she's getting any PT at home, or whether she'd be receptive. One thing she could do, if she's willing, is use the little home pedalers. They're like the pedals on a bike, but on a stand which can be used on a table for arm exercise or on the floor for leg exercise.

Could you get her to do exercise while listening to her favorite music? Even Tai Chi would help.

I can't help thinking that fraility is a medical rather than a mental issue. So many things could cause it - muscle weakness especially. I'm sure you feed her as well as you can, but I'm just wondering about her hydration level and any recent blood work as well. Is her fluid intake sufficient?

We finally realized we were both having weakness in our legs because we weren't eating that many potassium rich foods. I keep forgeting that I eat a lot of celery, which is a diuretic. Bananas and potatoes to the rescue!
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It's difficult to say if your mom is entering another phase of the dementia but as you know dementia is progressive and her dementia will continue to progress.
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