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Discussion in 'ARCHIVE FORUM: Support discussions' started by Lynne, Aug 5, 2008.
You're doing a grand job...Hang on in there pet.....
Love gigi xx
Early start to the day, with another 5.15 a.m. urgent wee need.
Should be straightforward now; commode in bedroom, so slip Mum's pants off while she's still laying down, slide her to edge of bed (on Tena sheet, so sliding easy for both of us), put my arms round her & do a kind of waltz from bed to commode seat. Snag is with the transition from horizontal to vertical mode, Mum often gets light-headed unless she has already been sitting up for a few minutes already.
This morning there wasn't time for that. I have mentioned before that she has been having small seizures, well this morning she had quite a prolonged one.
Not 'worse' from the aspect of convulsion, but certainly her limbs were much more spastic in their movements & the positions she adopted. I would say it was fully 4 minutes before she regained consciousness.
Once the clean-up operation was done & dusted, she settled down & slept for the next 4 hours straight. And once I reconnected the bed alarm, so did I!
Night-sitter coming in tonight, last of 4 of which I have been booked. I don't know if/when I shall get any more yet.
just sending you hugs to let you know you and your mum are in my thoughts.
I hope you have a good night tonight, Lynne, with no disturbances. I hope too that you get some more nighht sessions.
You're doing a brilliant job. I hope you're managing to get enough rest yourself.
Lynne love, what can I say? Just take care of you, whilst you are busy taking care of mum.
Think a group hug is needed here.
I hope I am part of the group hug - just feel for you so much.
I have experienced many night time traumas so understand how it is for you.
It is awful for you and your Mum - God give you strength.
Sending you and your Mum hugs to both of you.
Also sending you really warm hugs as well.
Can really feel for you,
With love and to your Mum as well,
I do hope you sleep well tonight.
I didn`t realize you only had 4 night sitters available. I thought they would be coming as long as they were needed. I hope you don`t have to wait long for more.
wishing you well
I have read you posts with interest as my mother-in-law has just started on the same path of not eating and i want to thank you for all the hints your thread has produced and the insight into what is to come.
what a wondeful person you are to take time to help others while going through a hard time yourself.
I wish you all the best with your mum.
my thoughts are with you.
[QUOTENight-sitter coming in tonight, last of 4 of which I have been booked. I don't know if/when I shall get any more yet.
I would have thought that you would require a more permanent arrangement than 4 nights Lynne. I hope you get a good sleep tonight.
I too sincerely hope they're going to book you up with some more night-sitters.
Round the clock care takes its toll...you must be exhausted.
Take care of yourself, too...if and when you can...
Thinking about you...
Love gigi xx
Hope you got some sleep last night xx
Situation mainly unchanged; Mum getting weaker, can't even sit up in bed without help now.
Sylvia, I don't think I'm limited to 4, it's just that apparently they arrange them in 'blocks' of a fortnight at a time, since palliative care is usually quite short-term.
The Community Nurse team tell me that they have asked for further night-sits for me, so hopefully they will materialise soon.
Shaz, I appreciate the kindness behind your remark, and other comments of a similar nature in this thread from other people. However, they embarrass me a great deal.
Whilst obviously I do hope that this record of events - and the helpful suggestions put forward by other TP members - may help anyone else faced with similar difficulties, I am USING it as therapy, to help me rationalise my thoughts and express my feelings in what is more or less the only way open to me. Of course, I can talk to Mike and to close friends, but there is only so much you can expect friends & family NOT actually involved in caring to understand, absorb & tolerate before they switch off. I don't blame them; until they've been here - where WE all are - they CAN'T really understand fully. So this thread is selfish as well, in a way.
None of us volunteer to be put in the position of 'family carer', it is a result of some sick spin of an evil roulette wheel somewhere & "tag, you're it!", you're in it.
Dear lord, several people here are doing it for the 2nd time around, caring for a partner having already been through the mill once with a parent. Many carers have jobs and children to care for & juggle with, in addition to caring for Mum/Dad.
My own circumstances are almost tailor-made for a family carer; not married, no children, no one else reliant on me for anything and I'm an independent person. I took redundancy two & a half years ago, and threw myself on the mercy of the state benefits system. Having worked full-time & non-stop for 37 years, paying full-whack contributions, I can justify that to my conscience.
None of these things are heroic; it's just the way I'm made & how things worked out. I only have 1 brother, and he's been in Australia for nearly 40 years.
During the 'downs' of my selfish life (and there have been a few!) my Mum has always been there for me, without question. How could I do anything else?
Mum's Alzheimer's has only really presented as severe short-term memory loss and, more recently, anxiety & insecurity. Her present condition is as much to do with her age as with Alzheimer's. It is only in the last couple of months that she has needed anything resembling nursing care, and even now she is just quietly fading away in her bed. There is no bizarre behaviour, no nastiness, and I fully realise I am incredibly lucky in this. She could be so much worse. There is no reason for her to be anywhere other than in her own home, with her own things (not forgetting the cat!) around her. And I have been lucky in that, at this late stage, I have been given all the support I need to be able to look after her there, thanks to a good GP, Community Nursing team and Marie Curie night-sitters.
Good night my friends, thank you for your support & love.
mum in law
I'm sorry to have caused you embarrassment, I read your thread about eating with interest as mum-in-law has begun to refuse food the same as your mum.
I to am very lucky with her illness, she is never rude or nasty, but can be stubborn as a child!! she is 91 and has had dementia for 3 years. she is on aricept and that seems to have slowed the progress.like you we do not have children and live in a bungalow so became the most suitable carers. I work full time so alot of the daytime care is done by her son. She has had a number of falls and then operations to repair broken hips, shes a fighter. only 5 stone but tougher than she looks.
many people ask why I do it and say they wouldnt care for their own mum let alone someone elses. the reason I do it is simple, she would have done it for me. she would never have said it was too hard or she couldnt cope. before this illness she was the most hardworking caring parent I have ever seen, so even though I get no sleep sometimes and have had to give up weekends it seems such a small thing to do after all she has done for her family. shes very shy and needs lots of encouragement and when she had respite care for a few days she didnt get this so we will continue to do what we can at home.
The eating is becoming a big worry, she tells me she is not hungry all the time and seems to struggle to swallow, luckily she likes the ensure milkshakes at the moment so we do manage to get something into her. she sleeps for probably 20 hours a day but suffers from nightmares so we spend alot of the waking hours comforting her.
How I wish I had found this site when father-in-law died in april, we decided after much thought not to tell her he had gone, she never asked after him before and didnt seems to recognise him when we did taske her to visit. so far so good she hasnt asked about him so the pain she would suffer if she knew has been avoided. have we done the right thing? I dont know but I fear the shock could have been to much for her so I think we have. father-in-law was in a nursing home after getting severe dementia, he would shout and scream for 48hours at a time and was doubly incontinent. he was aggresive and nasty and had to have his medications carefully managed. he lost the use of his legs and got a bed sore that wouldnt heal, the day he passed was a beautiful sunny day and we think he looked out of the window and thought he was back in cyprus and decided to go home.
Any way I have waffled enough, hope you are having an easier time and got some sleep.
my thoughts are with you
Your MiL and my Mum sound like two peas out of the same pod, don't they! Mum is 5 ft nothing and probably only 4 stone now. She seems to have been able to keep going on pure will power, fresh air, frequent drinks (of which she only takes about an eggcup full each time) and 3 or 4 teaspoonsful of ice cream or yoghurt a day. They certainly made women tough (but sweet) in that era!
How fortunate that your Mum (in Law) has retained her lovely personality; you have seen the other side of the coin at first hand with your FiL (whereas I have only really learned about it from TP) so you truly know what I mean when I say 'it could be so much worse'.
Thank you for understanding that I only used your comment because it happened to be the most recent, and for taking what I said in the spirit in which it was meant.
The support given to me in this Carers' group has been nothing short of fantastic, and I certainly didn't mean to sound as if I was knocking it or being ungrateful.
"Thanks everyone" just doesn't come near.
I think your mum and my mil would have been friends!!
your so right about this site, just reading the posts has bought me so much comfort, just knowing there is somewhere to post a message and be able to get support and advice is a huge relief. it has also been sad, as i've read some of the stories i have cried. i now feel so much luckier than others who have much worse problems.
mil is not to bad today, she doesnt want to get up and says she is exhausted, nothing unususal in that. but she has had 2 cups of tea. she also has a heart condition which she takes digoxin for and had a small heart attack in april, there is also some concern that she has myeloma, but the doctor has said old age will get her before any of these. we are thankful for every good day and make the most of all occasions like birthdays and xmas with her
She got up yesterday and I said, There she is the lazy one, she laughed her head off and said yes I'm alive. So glad she can still laugh.
thanks for swapping stories.
Mum's quiet today, but wakeful, dozing not sleeping. I tried sitting in her room with her, reading a book, but she couldn't settle to doze with me there, & I couldn't get into my book with her chirping up every few seconds (not as if it was 'conversation', mostly just "what time is it?" over & over again, and often "Are you going out again?"
WHICH REALLY PUSHES MY MAD BUTTON as I might have mentioned before!)
So I've given up that idea, as it was doing more harm than good. I took the radio in when one of her favourite programmes was on R4, & she's been listening to that all day. It's strange; for most of her life she has listened to the radio constantly - plays, current affairs programmes, serials, documentaries, dramas, quiz programmes. For as long as I can remember there has been a radio in every room of the house, including the bathroom. Then last year she suddenly stopped listening; "I can't be bothered" or "I don't want to any more". I thought perhaps it was because she had lost touch with world affairs, & listening brought that home to her.
I pop in at least every half hour (if she hasn't called me before that) with a drink of some sort. She's only having a wee every 2 hrs in daytime now, about every 3 hrs at night. Often she says she doesn't want one, but we do our little waltz from the bed to the commode & she usually has something to offer. It's better to prompt her, 'cos if I leave it for her to tell me she's usually bursting & that's not good! I think she's afraid to think about getting up now that her legs won't work for her, which is quite understandable.
Ref. night sitters, the Dist Nurse Team tell me thay have requested more, so I shall just wait (hopefully) for a phone call. I've got into the habit of going back to bed after Mum's 8am wee break to top up my sleep, I'll have to watch that!
Mike popped over on my bike this afternoon, just to give it a run, bearing chocolate, mushrooms & this week's copy of Motorcycle News - what a guy!
Lest you think I have strange taste buds, I do NOT dip the mushrooms in melted chocolate [Gigi], but do find a few mushrooms sweated in butter liven up most savoury meals. The chocolate was in the form of buttons, which Mum is partial to. Today she ate her 'tea' - 4 pieces of bread & plum jam (each piece about the size of a postage stamp) & TWO whole chocolate buttons. That's the most she's eaten for many days. So I suppose today is a 'good' day!
Just saying hi, Lynne, and thank you for the update.
It all sounds so peaceful, but I know how tiring it must be for you. I hope you get your night-sitters.
Thanks Hazel, me too!