Hi, I have not posted for a while - but check this board regularly. Just to let you know a bit of history .... (sorry if it is too long)
Mum has had dementia for 12 years (she's 75 now) and Dad was her carer - she gradually stopped doing the normal things, and Dad had to stop work to look after her. He eventually did everything, cooking, cleaning, shopping, etc. while mum just argued and argued. She would not leave the house (only to go to the bank to get money out) and would only eat "ham and chips" or boxes and boxes of cakes. We had spoken to Dad about getting help and he always said "when I can't cope any more I will get help". Each time I threatened to intervene he got annoyed and told me to "mind my own business".
Eventually dad was unwell (badly anaemic) he went to the doctor who first thought his breathlessness was due to asthma and gave him a pump - and a blood test - while he was there he explained that he had problems with Mum, unreasonable behaviour he said. Unfortunately the doctor said that unless he could get Mum there, nothing could be done - and she refused a home visit.
Dad got a call the next morning and had to rush to the hospital as his blood count was dangerously low. Dad was put on iron tablets and told to come back in 3 months. He went back home, obviously unwell, and with mum as unreasonable as ever. A month later, Dad had a stroke (from the stress we believe) a week before he was due back to the doctors where he had planned to ask for help (and we had planned to send the doctor a detailed letter prior to his visit - as she would not discuss mum with us). Mum was annoyed with him because he could get up off the floor and eventually (3 hours later) she rang me at 3.30 in the morning saying "dad wants to know are you coming over".
Sadly, we lost Dad the next day and brought Mum home to my house. It was awful, she had forgotten Dad had gone - and didnt want to be here - just wanted to go home. We managed to get her to the doctors when my brother went to get dad's death details - and she took one look at Mum, called Social Services who "sectioned" her. All this 5 days after we had lost our Dad. Mum was placed in a Mental ward for assessment. Because she was so argumentative (hitting everybody, nurses and patients alike - as she did Dad and us) they gave her more drugs which turned her into a zombie. They said to us "yes she has dementia - do you want her ?" We were told we would have to give up work as she needed 24 hour care - and the best thing was to place her in a specialist facility. We argued that she was not ready - and they said yes she was. I found a lovely place up the road from me . That was 2 years ago - since then, mum fell and broke her hip - while in hospital she forgot how to walk (the anaesthetic had made her worse we were told).
She was released from Hospital to a nursing home (not an alzheimers facility)and has been there since. She no longer knows us (she expects us still to be young and talks about her baby boy - my brother who is 45) She sometimes thinks I am her sister (she never had a sister only one brother) - but I can be her sister if she wants - at least I am family. She is now totally incontinent, cannot talk properly (maybe saying one or two words making sense but the rest is jibberish) and just sits there fiddling with her clothes.
I should say at this point that my brother (who lives miles away) had always denied her illness - saying she had just turned into a hateful spiteful old woman -my sister and I were more definite - especially as her mother had the same - and she wasn't our mum any more. Gone was the kindness and love she had always shown us. (she would empty her freezer to give us food - but now would not like us to take an ice-cream for her grandson)
We noticed last week that mum is unable to co-ordinate her left hand (we gave her a biscuit and she couldnt put in her mouth properly) but the right hand is OK.
I told my brother about this and he thinks that she should have some physiotherapy on her left hand to "bring it back as it was". My sister and I think it might be a further deterioration - and would rather she was not bothered with the physio (though I have talked to my brother about the coloured beads that I saw posted here a while back) - but mum is not in a wheelchair - she has a large armchair on wheels because she can't sit up and wants to lay down - and there is nowhere to attach it to. My brother says we should not give up - and physio will improve her condition (as will joining in with the games) - both of which she doesnt want. Mum has badly deteriorated since losing Dad (and of course moving her from her home and familiar surroundings has made it worse)
We have enough guilt over everything (not intervening sooner, mum's placement, not being able to cope with her) and would not want to deprive mum of the physio if it could improve things - but at the same time, she is in the final stages, and would not want to have her pulled about for nothing.
Sadly enough, your story is all too common. You can feel guilt, but in fact your Dad made his own choices and it is very difficult for children to intervene when a parent wants to shut them out. Sometimes we just have to let people be, even when we recognize the dangers, we can't control everything for everybody. Placement is the best thing for your mom and for you as well. You cannot become a professional nurse on call 24/7 just because that's what she needs, you have to live your life, too. Your bro is also doing as so many do, denial is sometimes the best way to get thru something you cannot otherwise control. But you want to know about therapy in the final stages--you have to realize that nothing is going to make an AD patient better--nothing. There comes a point when the best we can do for them is comfort care. That having been said, there is nothing to be lost if you try the therapy once or twice and see how she tolerates it, but chances are that even if there is improvement, it won't be long-lasting. Sometimes it is a good thing if we just leave a loved one in peace. Try not to grind yourselves up over all of this--no one could have prevented it, it's no one's fault that it happened. In the normal course of events we all lose our parents, it's just that w/AD it seems so much more difficult, why can't we do more, make them better? But we can't. Enjoy your mum as much as possible, give her lots of hugs, loves, and kisses. Tell her how much you appreciate all that she did for you, somehow she'll understand and you'll feel better.
Thanks for replying Betty - yes I know my story is common - it is sadly all too evident on this board - and I also know that we all feel the guilt - but nomatter how many times I tell myself mum is obviously better cared for than I could ever care for her, the guilt won't go away. I know we all relate to each other's postings and that we are all in this desperate battle together but the hurt is still there for all of us.
We have spoken to the Home's manager who said he was already aware that Mum couldnt manage to eat a sandwich and has arranged for the doctor to call next Tuesday - he said it may be a mini-stroke. As I mentioned before, mum's home is not an Alzheimers facility - it is a nursing home which is attached to the hospital she was in for the hip op - and she was categorised as Class A (meaning she needs 24 hour total nursing care). Although they have a couple of dementia patients, and they are aware of mum's diagnosis we worry that the carers may not be aware of her condition, or how to react/respond to it - they often ask us what's wrong with her - she doesnt speak ? Unfortunately, mum's previous home would not take her back after her fall as she could no longer walk - (her legs just dangled like a rag doll when they tried to stand her up in hospital). Since being at the new home mum has gained weight (though she has declined in her mental state) - she was 5 stone when she was first there and has gained a stone since Feb 03. She is looked after well and is regularly toileted and kept clean - (though she still lashes out on occasion when she is disturbed) she sleeps most of the time (or we think shuts her eyes as if asleep - but will still repeat words she may pick up from overheard conversations from around the room).
How hard it is to see our loved one like this. How cruel the disease that can't be treated, can't be seen and can't be cured. I will let you know what the doc says.
God Bless
Hi again, Just an update. Spoke to Manager today after doctors visit to Mum - Sadly, our suspicions were correct, not a stroke, it is deterioration of her illness.
I mentioned that my brother had suggested some form of physiotherapy and he said that it was in "short supply" and in any case, it is doubtful whether it would make any improvement. I was glad he said that, as my sister and I don't want her aggravated more than is necessary, especially for nothing.
I have mentioned to the Manager about giving her some beads to play with (even her Rosary) - which in itself, could be a form of self-physio - it would be better she played with something colourful, and maybe differing shapes and sizes rather than just sit there and play with her clothes - Mum's illness has made her hands very fidgety - she actually rubbed bobbles on her clothes when she was at home and especially now before she is due her meds - she is only being treated for Parkinsons as the respiridol and haloperidol caused her neck to twist) He said he would have no objection - the only problem is that it is kept with her - there is a tendency to lose small things there i.e. all mum's hair bands seem to disappear - we assume they fall off and get hoovered or swept up or put in someone elses room - and not being there all the time, we would have no control in making sure mum is given her beads every day. - but that is another story .....
Sorry your Mom is having more problems. I agree with Betty, all you can do is the best you can - and with an Alzheimer's patient, most of us run out of time or steam before our parent does. Guilt is only for something you did wrong or shouldn't have done. You did right by placing your mother where she can get the best care - you cannot stay up to do the 24 hour care she needs now. Whne you have a guilty thought pop into your head, talk back and tell it to go away. You did well!
I made a colorful "necklace" for mom out of stout cord and children's colorful wooden beads and colorful plastic faceted beads. She forgot how to walk a year ago, so I was able to fasten the necklace to the arm of her wheelchair. She does enjoy fiddling with it and it cannot get away. At first, she tried to loop it over her head like a necklace, but I'd made the cord too short for that.
Remember to be kind to yourself! Blessings - Barbara
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