Has anyone had a loved one at home till the end

[buttercups]

Hi everyone,
I've had mum living with myself and my husband nearly a year now. I think she's in late stage 6 Alzheimer's .
Itsbthe hardest thing I've ever had to do. Her sleeping routine is very bad, waking early hours every day and with myself or hubby has to come downstairs to give the other of us a bit of sleep.
Mum is mostly incontinent speaks absolute gibberish and will not keep still even though her walking is very bad she is up and down constantly. Fidgeting constantly. She can't do anything for herself and is in a sad situation. I feel very sorry for her but it's taking it's till on me.
I wonder if any of you have had your LO live you until the end and can advise me what is likely over next 12 months of this dreaded disease. Mum has not yet encounter uti or chest infections although she is often aspirating slightly after eating.
Thanks on advance x

 

[chickenlady]

Hi everyone,
I've had mum living with myself and my husband nearly a year now. I think she's in late stage 6 Alzheimer's .
Itsbthe hardest thing I've ever had to do. Her sleeping routine is very bad, waking early hours every day and with myself or hubby has to come downstairs to give the other of us a bit of sleep.
Mum is mostly incontinent speaks absolute gibberish and will not keep still even though her walking is very bad she is up and down constantly. Fidgeting constantly. She can't do anything for herself and is in a sad situation. I feel very sorry for her but it's taking it's till on me.
I wonder if any of you have had your LO live you until the end and can advise me what is likely over next 12 months of this dreaded disease. Mum has not yet encounter uti or chest infections although she is often aspirating slightly after eating.
Thanks on advance x

My Dad lived at home with my elderly Mum until she finally had to admit that she couldn't cope any more so they both came to stay with me. As it happened he deteriorated rapidly and died within a week of being with me. In the weeks before he came to me, he was becoming more agitated and restless and also more unstable on his feet, they brought the bed downstairs to avoid him falling but he couldn't really understand that either.Talk to your GP about suitable night sedation, no one can work night and day so if she gets sleep you can cope better during the day. Don't feel guilty about night sedation it may save your sanity. Don't get hung up on what stage and how long each stage should last as each person is so different and my Dad was well until he had a fall, after that he went downhill and died within 2 months. If this final stage is dragging on talk to your GP about her going into respite care for a fortnight so you can have a break.

 

[buttercups]

Thanks for your reply chickenlady. Mum takes a sleeping tablet and an antipsychotic drug because before she hardly slept more than an hour uninterrupted. It's very hard not trying to guess what stage mum is at, as you say everyone is so different. Her anxiety and agitation are awful. X

 

[witts1973]

Hi everyone,
I've had mum living with myself and my husband nearly a year now. I think she's in late stage 6 Alzheimer's .
Itsbthe hardest thing I've ever had to do. Her sleeping routine is very bad, waking early hours every day and with myself or hubby has to come downstairs to give the other of us a bit of sleep.
Mum is mostly incontinent speaks absolute gibberish and will not keep still even though her walking is very bad she is up and down constantly. Fidgeting constantly. She can't do anything for herself and is in a sad situation. I feel very sorry for her but it's taking it's till on me.
I wonder if any of you have had your LO live you until the end and can advise me what is likely over next 12 months of this dreaded disease. Mum has not yet encounter uti or chest infections although she is often aspirating slightly after eating.
Thanks on advance x

Hi if her walking is very bad,when she can no longer weight bare she will be given a hospital bed so is contained,I know that sounds awful,but the nurse said to me I was lucky as it was easier for somebody to be safe and looked after, has your mum had a needs assessment so they can see what they can do to help,if she has funds over the limit £23,250 she will pay or if less than the lower limit £14,250 the LA will pay,between those amounts the LA pay a portion of it,my mum has a bed wash in the morning and 3 further calls for pad changes,I feed mum and give her drinks all day as she cant hold a cup,and keep her company

 

[buttercups]

Thanks for your reply Witts. It would be so much easier if mum was "contained but she is determined to walk, walk, walk even though she's walking lopsided now due to pain and arthritis. But she will not stop. Awfully, I think it would easier if she could no longer walk as a fall is inevitable. I just wonder how she is likely to deteriorate. Does your mum live with you? It sounds like like your mum is also severe?

 

[Tin]

My mum lived with me for almost 5 years till her passing in November 2018. Can honestly say that her restlessness was the hardest part to deal with, she just could not or would not sit down for more than a few minutes and bedtime was hit or miss if she would stay in bed and oh the furniture moving, could not walk passed a chair without moving it. One or two falls last Summer effected her mobility, but bless her, she would still try and even in bed at night it looked like she was peddling on a bike or doing the can-can, this started in her last year, but at least she stayed in bed. It was hard, but I had to accept that because of the restlessness there was a high risk of a fall even though I had eyes on her 24/7. I did restrict her access to certain rooms and moved a lot of furniture into the garage, my aim being to make it as trip free as possible.

A few things that I bought from charity shops did help, at least she would sit at dining room table with these spread out and she would amuse herself for a while, then when bored or no longer interested I would change for a different set of things.

Just to mention, are you sure that the lopsided walk is not due to the medication she is taking? Mum's lean was always bad after taking lorazepam or diazepam.

 

[witts1973]

Thanks for your reply Witts. It would be so much easier if mum was "contained but she is determined to walk, walk, walk even though she's walking lopsided now due to pain and arthritis. But she will not stop. Awfully, I think it would easier if she could no longer walk as a fall is inevitable. I just wonder how she is likely to deteriorate. Does your mum live with you? It sounds like like your mum is also severe?

Hi I have always lived with my mother 45 years together she started to have a few falls around the town and it was a quick progression to losing mobility completely as she couldn't weight bare,so in a hospital bed now,she has shaky hands so I feed her the majority of the time and have to offer a drink frequently as she's unable to get a drink to her mouth and to be honest she wouldn't remember to drink anyway if I wasn't here.I have no idea what stage she is at,but I make the most of each day.
My mum is 5' and is a little chubby,so I have always joked that it was the chubby bits that prevented her from getting injured when falling and at 5' she didn't have far to fall.
She has carers that come in and change her pads,I feel so sorry for the people that are having to cope with incontinence with more active people that have to clean the house/chairs etc a few times a day,I'm just pleased to help her and be able to make sure she gets good healthy food,that I can heat up a few times during the meal so it stays warm,I have always had a good sense of humour and still have it,I enjoy making my mum laugh through the day

 

[buttercups]

My mum lived with me for almost 5 years till her passing in November 2018. Can honestly say that her restlessness was the hardest part to deal with, she just could not or would not sit down for more than a few minutes and bedtime was hit or miss if she would stay in bed and oh the furniture moving, could not walk passed a chair without moving it. One or two falls last Summer effected her mobility, but bless her, she would still try and even in bed at night it looked like she was peddling on a bike or doing the can-can, this started in her last year, but at least she stayed in bed. It was hard, but I had to accept that because of the restlessness there was a high risk of a fall even though I had eyes on her 24/7. I did restrict her access to certain rooms and moved a lot of furniture into the garage, my aim being to make it as trip free as possible.

A few things that I bought from charity shops did help, at least she would sit at dining room table with these spread out and she would amuse herself for a while, then when bored or no longer interested I would change for a different set of things.

Just to mention, are you sure that the lopsided walk is not due to the medication she is taking? Mum's lean was always bad after taking lorazepam or diazepam.

Thanks for your reply Tin.
It made me laugh when you said you could hear your mum moving furniture. My mum was the same. When she first goes to bed she sleep like a baby with the help of meds, until 4.30ish. When she gets up she dies not stop, even though she is tired.. The only thing that keeps her attention for maybe 20 minutes at a times is a pack of playing cards. Nothing else, not tv, dot to dot, puzzles, board games, dominoes, dolls tv.
How long did the restlessness last with your mum? Will my mum eventually calm down?

 

[buttercups]

Hi I have always lived with my mother 45 years together she started to have a few falls around the town and it was a quick progression to losing mobility completely as she couldn't weight bare,so in a hospital bed now,she has shaky hands so I feed her the majority of the time and have to offer a drink frequently as she's unable to get a drink to her mouth and to be honest she wouldn't remember to drink anyway if I wasn't here.I have no idea what stage she is at,but I make the most of each day.
My mum is 5' and is a little chubby,so I have always joked that it was the chubby bits that prevented her from getting injured when falling and at 5' she didn't have far to fall.
She has carers that come in and change her pads,I feel so sorry for the people that are having to cope with incontinence with more active people that have to clean the house/chairs etc a few times a day,I'm just pleased to help her and be able to make sure she gets good healthy food,that I can heat up a few times during the meal so it stays warm,I have always had a good sense of humour and still have it,I enjoy making my mum laugh through the day

Aw Witts, you sound a devoted daughter. I adore my mum, but she annoys the heck out of me, she's so awkward, (didn't used to be before Alz). It's getting to the stage now where I'l have to start feeding her. She's picks her good up and might put it down her jumper I have to be next to her instructing her lol.
It's good you make your mum laugh. That was something mum and I used to have in common, a wicked sense of humour, but that's all gone now. She smiles alot but never laughs.
I want to enjoy her last months on earth but her restlessness is getting to me. Meds have been changed far too many times, don't want to change them again, as mum was far worse 6 months ago...

 

[Tin]

Thanks for your reply Tin.
It made me laugh when you said you could hear your mum moving furniture. My mum was the same. When she first goes to bed she sleep like a baby with the help of meds, until 4.30ish. When she gets up she dies not stop, even though she is tired.. The only thing that keeps her attention for maybe 20 minutes at a times is a pack of playing cards. Nothing else, not tv, dot to dot, puzzles, board games, dominoes, dolls tv.
How long did the restlessness last with your mum? Will my mum eventually calm down?

It never really stopped, although she did slow down, but instead of sitting she would just stand still and then she would be off again. It just got easier for me to ignore and get on with other things. It did get easier in the evenings around January 2018, with the odd bad night, she was finding it a lot harder to get out of bed by herself.

 

[witts1973]

Aw Witts, you sound a devoted daughter. I adore my mum, but she annoys the heck out of me, she's so awkward, (didn't used to be before Alz). It's getting to the stage now where I'l have to start feeding her. She's picks her good up and might put it down her jumper I have to be next to her instructing her lol.
It's good you make your mum laugh. That was something mum and I used to have in common, a wicked sense of humour, but that's all gone now. She smiles alot but never laughs.
I want to enjoy her last months on earth but her restlessness is getting to me. Meds have been changed far too many times, don't want to change them again, as mum was far worse 6 months ago...

Hi I'm a son,there are a few things that she can manage as finger foods but it's mostly little fingers of cake that I buy packets of 6 thin slices from Sainsburys,I got a good tray for the feeding that has a bean bag attached to the bottom so it sits steady and that sits on the side of my mums bed,I often have my plate on the tray and have some of my food while mum chews hers.
To be honest I suppose I get more smiles than laughs,it's nice to lock the front door when the carers have made that last call and relax.
I'm sure that things will change for you and your mum will become more relaxed as things do change,anyway the feeding should be easy so don't worry about that.