It is horrible I wish I could parcel up some of mum's energy and mobility and give to your mum. I can understand why you are so worried. I wish the techie students that come on to the site would think about improving the hoist contraptions and filling that 'gap' that you are dealing with. Have your back problems eased yet?
Vascular dementia and TIAs
- Thread starter Marnie63
- Start date
@Marnie63 you are an absolute saint for doing all you are doing & i’m pleased that you have a great team of carers helping you.
You do have to consider your own health though & I do worry that you are suffering with too much lifting yourself.
It may be time to consider a nursing home for your mum. Or at least some respite care so you get a proper break.
You do have to consider your own health though & I do worry that you are suffering with too much lifting yourself.
It may be time to consider a nursing home for your mum. Or at least some respite care so you get a proper break.
Yep, I know. It's not my fault she's unable to stand and therefore has to stay in bed. Why can't I stop trying to make things 'normal'?! I had a long chat on the phone with a friend last night and she made me see that some of the stuff I'm trying to do with/for mum is mainly for my benefit, because it's what I want her to be doing, as it's still 'normal', but of course to mum it makes no difference. I won't bore you with the details, but she has helped me to see things in a slightly different, perhaps more sensible, way. Her father had Vascular Dementia, so she does understand.
One thing that struck me while I was out and about today was that when this started, my life with mum and dementia seemed so abnormal compared to how life was before, but now, two and a half years on, my life with mum and dementia seems the norm, and getting out and whizzing up the motorway for a few hours' break seems abnormal. It really does feel like day release from prison. (I've never been in prison (yet), but it's how I imagine day release would feel!!).
My back isn't too bad today. It's just strain on the muscles, but I must keep it in check as if I keep adding strain upon strain, then things will, I imagine, just get worse. I am very healthy (well, I was!) and it's frustrating that someone else's illness can have such a detrimental effect on your own. And so unfair of course. I did manage to get mum on the commode this morning for a wash, but the carers did a bed change while I was out, and the evening carer will help me again later. I definitely need to cut down on the number of times I risk straining my back.
I am not ready to consider a nursing home for mum yet, but I am ready to rethink the care at home and I need to start adding some more care calls in. I can do the feeding and, up to a point, the washing, but it's the toileting which is the killer for me. So, I need to address that and get some more calls in so that that situation is eased a bit for me. And then, we'll see. Maybe it will still all be too much for me, and then I will have to consider the home. I guess I am, like most people, hoping for 'something to happen' so that I don't need to go down the nursing home route. But, it may not happen for some time yet. I'm looking into some respite. I may try a live in carer (from the same agency) for a weekend so see how that goes, and if it works, may try a week away later in the year, though things could have changed by then ...
One thing that struck me while I was out and about today was that when this started, my life with mum and dementia seemed so abnormal compared to how life was before, but now, two and a half years on, my life with mum and dementia seems the norm, and getting out and whizzing up the motorway for a few hours' break seems abnormal. It really does feel like day release from prison. (I've never been in prison (yet), but it's how I imagine day release would feel!!).
My back isn't too bad today. It's just strain on the muscles, but I must keep it in check as if I keep adding strain upon strain, then things will, I imagine, just get worse. I am very healthy (well, I was!) and it's frustrating that someone else's illness can have such a detrimental effect on your own. And so unfair of course. I did manage to get mum on the commode this morning for a wash, but the carers did a bed change while I was out, and the evening carer will help me again later. I definitely need to cut down on the number of times I risk straining my back.
I am not ready to consider a nursing home for mum yet, but I am ready to rethink the care at home and I need to start adding some more care calls in. I can do the feeding and, up to a point, the washing, but it's the toileting which is the killer for me. So, I need to address that and get some more calls in so that that situation is eased a bit for me. And then, we'll see. Maybe it will still all be too much for me, and then I will have to consider the home. I guess I am, like most people, hoping for 'something to happen' so that I don't need to go down the nursing home route. But, it may not happen for some time yet. I'm looking into some respite. I may try a live in carer (from the same agency) for a weekend so see how that goes, and if it works, may try a week away later in the year, though things could have changed by then ...
Sounds like you are back on form. Always tell people that this illness is, one stone 2 birds., misquoting I know. How we adapt to this strange way of life without really seeing it happen is a testament to how strong we are. Take care, hope you can rest your back.
Yes, feeling a bit better today Tin, but have already had a taste of another way dementia will get its own, ugly way even if I do have more carer visits - the carers tried to toilet mum twice, but she way dry! I was late back, and fortunately the carer who was still here had time to wait before her next call, so she stayed on a bit, and helped me change mum. That was at 4pm. Mum hasn't been since, and I know what's coming - a carer will come again at 9.30, mum will be dry, no need to change. Half an hour after carer leaves, she will have gone, so I will have to change her on my own anyway. So, I could have loads more agency calls, but if mum doesn't synchronise her toileting habits with the calls, it still won't work! Blasted dementia wins every time! Grrrrr….
I guess in a nursing home the change times will just happen according to the routine of the carers, and if she is dry, she would have to wait until the next round of changes? But it's hard for me to leave her overnight if I know she's had a wee! At least with getting her on the commode this was easier for me to deal with alone.
There's only one word for this which I sometimes repeat several times in a loud voice. I can't write it here, but it's really satisfying to use it sometimes to ease the tension! Damn I sometimes get so ANGRY about all of this, but who to be angry with?!
I guess in a nursing home the change times will just happen according to the routine of the carers, and if she is dry, she would have to wait until the next round of changes? But it's hard for me to leave her overnight if I know she's had a wee! At least with getting her on the commode this was easier for me to deal with alone.
There's only one word for this which I sometimes repeat several times in a loud voice. I can't write it here, but it's really satisfying to use it sometimes to ease the tension! Damn I sometimes get so ANGRY about all of this, but who to be angry with?!
I feel quite 'broken' today. I've managed to give mum a full flannel wash and I've got her into the wheelchair. I'm exhausted, and we haven't even had breakfast yet! Why am I doing this? Who and what am I doing it for? There is no better outcome for mum if I end up breaking myself with this, it won't make things any better for her dementia. I think I need to try to push my head towards a nursing home for her. I'm almost beginning to think that what is 'out of sight' will be better for me to deal with. Doing all the physical and emotional stuff, while watching the dementia progress, is ridiculous for one person to be dealing with and yet, I can't seem to let go. I am 99 per cent sure that mum, if well, would be saying that her life is nearly over, and that I should look after myself, but I can't seem to get my head around this!
I wonder if I will be brave enough to call Social Services on Monday?
I wonder if I will be brave enough to call Social Services on Monday?
@Marnie63 I'm so, so sorry you're so exhausted and worn down, it's so hard and so relentless.
Just a suggestion and just to bear in mind, but your SS should have a duty SW on the end of a phone over the weekend in case you feel the need to call for immediate help?
My heart goes out to you (((X)))
Just a suggestion and just to bear in mind, but your SS should have a duty SW on the end of a phone over the weekend in case you feel the need to call for immediate help?
My heart goes out to you (((X)))
Thanks @Prudence9. I often think of you as I wonder how you dealt with your mum being bed bound towards the end. I just find it so utterly, utterly difficult to change her in bed. She's not small. Not huge, but large enough to make it hard (even though she has lost some weight), but I guess it's hard for whatever sized person you are changing. It's just so damn physically hard, I can't do it!
Thanks also for the suggestion about SS. I have had to resort to emergency respite in the past, and they were extremely helpful at the time. I hope that this time, should I have to ask for their help, then I'll have more time to consider where she goes.
Thanks also for the suggestion about SS. I have had to resort to emergency respite in the past, and they were extremely helpful at the time. I hope that this time, should I have to ask for their help, then I'll have more time to consider where she goes.
I hope so too @Marnie63 - to give you time to make a more "considered" decision and therefore some peace of mind.
I just sort of got used to it with Mum, she was more or less bed-bound from early 2015 but the most stressful part for me was getting her on and off the commode and my back, knees and elbows were definitely squeaking!
By the summer of 2016 she was totally incontinent and could no longer weight-bear so for the last 18 months everything was done in bed.
To be honest, I found that easier once I'd got a routine established - I have NO idea how you've coped with the immense struggle of getting your Mum in and out of bed and helping her so well and so diligently.
Go easy on yourself please Marnie, do as little as you can over the weekend, see how you feel on Monday and know we're all here rooting for you and your Mum.
With love xxx
I just sort of got used to it with Mum, she was more or less bed-bound from early 2015 but the most stressful part for me was getting her on and off the commode and my back, knees and elbows were definitely squeaking!
By the summer of 2016 she was totally incontinent and could no longer weight-bear so for the last 18 months everything was done in bed.
To be honest, I found that easier once I'd got a routine established - I have NO idea how you've coped with the immense struggle of getting your Mum in and out of bed and helping her so well and so diligently.
Go easy on yourself please Marnie, do as little as you can over the weekend, see how you feel on Monday and know we're all here rooting for you and your Mum.
With love xxx
There are some things in this game where I've set a kind of 'line' for myself, a line I said at the start that I would never cross. But …. ! I remember, right at the start, saying that if it came to my house having to be filled with all sorts of beds and equipment, that was the time for mum to move to a home. Well, it has been well filled with all sorts of equipment, hospital bed, hoist, commode, rotunda, two wheelchairs and here we still are! One thing I refuse to let happen is to 'let myself go', and I've kept to that one. Tick. I said I would never give up work - I did. In fact, I gave it up once, right at the start, got asked back a year or so later, went back, then had to give it up again when mum had the major stroke last August. I was asked back again recently, what luck, what fortune, but, decided it was foolish as such intense caring and work do not really mix. So, that line was crossed - work - gone!
You are right @Carmar - I do see this as a bit of a showdown between me and dementia. I would never have dreamed of trying the same tactic with dad's cancer - I knew that was a battle not even worth starting (he declined very quickly and in hindsight that experience was actually a lot easier in some respects than mum's dementia). I think it's because it's so long and drawn out, the death in slow motion, that maybe I lose sight of the end, and keep trying to make things better!
I'm really torn about this. I managed to get mum onto the commode again after breakfast, but she was so tired by then, that I put her back to bed. Just did a bed change. It wasn't so bad. It really depends on how I feel at the time. It certainly is easier on my back to do the bed changes than it is trying to support her on the rotunda.
The big problem is that I can't let go. I will let go of her when death comes, but I find it almost impossible to let go of her while she's still alive. Doesn't help me much, does it?! Also, while she's here I can deliberate and keep changing my mind, but I am well aware that once she goes into a nursing home, then she will end her days there. And even though I know I can be there every day ….. I still can't let go.
You are right @Carmar - I do see this as a bit of a showdown between me and dementia. I would never have dreamed of trying the same tactic with dad's cancer - I knew that was a battle not even worth starting (he declined very quickly and in hindsight that experience was actually a lot easier in some respects than mum's dementia). I think it's because it's so long and drawn out, the death in slow motion, that maybe I lose sight of the end, and keep trying to make things better!
I'm really torn about this. I managed to get mum onto the commode again after breakfast, but she was so tired by then, that I put her back to bed. Just did a bed change. It wasn't so bad. It really depends on how I feel at the time. It certainly is easier on my back to do the bed changes than it is trying to support her on the rotunda.
The big problem is that I can't let go. I will let go of her when death comes, but I find it almost impossible to let go of her while she's still alive. Doesn't help me much, does it?! Also, while she's here I can deliberate and keep changing my mind, but I am well aware that once she goes into a nursing home, then she will end her days there. And even though I know I can be there every day ….. I still can't let go.
My 'line' keeps getting pushed forward. Initially I told myself that the incontinence would probably be the time when I stopped and then when my home started to look and smell a little like a care home. So many lines I have pushed passed, now I am not sure how far I could go, but every thing you say makes perfect sense to me and like you I know the letting go will be very difficult.
You love her Marie. Anywonder you can't let go. All of this care you are providing is not just for your benefit. Your mum may not understand, but you know that what you are doing is for her well-being.
But you should be thinking if yourself too. If you become too exhausted, or end up with an injury, your ability to help her may be affected. I'm glad you have sought extra help.
Only you will know if and when you are ready. I can only imagine how hard the line will be to cross. All decisions you have made and will make are the right ones, because they are done with her well being in mind *hugs*
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Yes Quenelise, you got it right. She's my last living relative, after mum has gone, I'm on my own. And there are a load of memories that will go with her (common for all of us, I know), plus some language and cultural stuff that will go with her too. I guess that's all part of why I'm trying to 'hang on' to her at home for so long.
I think I have got to start riding the bad days, as yesterday was better. I am getting a bit more used to the bed changes. Maybe it will not be so bad. Max 4 times a day, but usually only three as I always have an evening carer call. Plus, some days I have morning calls too. Maybe I will adapt, as I have done to everything else this damn awful disease has thrown at us. I will wait a while longer, just to see.
Just back from an hour at the dentist for a crown prep. I wondered, as I lay there in the chair with the usual stuff in my mouth and all the drilling going on, how many dental sessions I would endure for mum to be free of dementia. I know that is not an option, just a bizarre thought that crossed my mind. The answer is probably quite a few!
I think I have got to start riding the bad days, as yesterday was better. I am getting a bit more used to the bed changes. Maybe it will not be so bad. Max 4 times a day, but usually only three as I always have an evening carer call. Plus, some days I have morning calls too. Maybe I will adapt, as I have done to everything else this damn awful disease has thrown at us. I will wait a while longer, just to see.
Just back from an hour at the dentist for a crown prep. I wondered, as I lay there in the chair with the usual stuff in my mouth and all the drilling going on, how many dental sessions I would endure for mum to be free of dementia. I know that is not an option, just a bizarre thought that crossed my mind. The answer is probably quite a few!
I think some of us have that kind of fantasy that our mums & dads etc will be able to live out their days at home but the reality is often not like that.
My reality is that I can’t give up work, I have to pay the rent & bills.
My mum is also very demanding & would want my attention every 5 minutes. Her toileting is to the extreme, she tends to want to go every 30 minutes.
We considered more carers at her home but to be honest once it had been established that she was deemed to have no capacity, there was only really only 1 option for her & that was a care home. It was the night time care that was the issue & with her history of falling at mainly night time, we couldn’t risk her being on her own for 12 hrs at a time. If she would have passed the CHC assessment & qualified for NHS paid care then the care at home option could have been great but she didn’t pass it. I know she can go for the assessment again shortly.
If we wanted to have her living with us then we would have had to sell her house & then try & buy somewhere suitable for all of us & there just wouldn’t be the budget for somewhere big enough with an annexe for my mum. Everyone’s circumstances are different though & once again @Marnie63 i totally admire you for what you are doing xx
My reality is that I can’t give up work, I have to pay the rent & bills.
My mum is also very demanding & would want my attention every 5 minutes. Her toileting is to the extreme, she tends to want to go every 30 minutes.
We considered more carers at her home but to be honest once it had been established that she was deemed to have no capacity, there was only really only 1 option for her & that was a care home. It was the night time care that was the issue & with her history of falling at mainly night time, we couldn’t risk her being on her own for 12 hrs at a time. If she would have passed the CHC assessment & qualified for NHS paid care then the care at home option could have been great but she didn’t pass it. I know she can go for the assessment again shortly.
If we wanted to have her living with us then we would have had to sell her house & then try & buy somewhere suitable for all of us & there just wouldn’t be the budget for somewhere big enough with an annexe for my mum. Everyone’s circumstances are different though & once again @Marnie63 i totally admire you for what you are doing xx
No I dont think Ur awful at all thinking that I've often sat there wishing she would pass away peacefully I love my mum dearly and always been close infact did everything together and at times I feel lost but I can't watch her suffering like this very confused agitated it would b selfish of me to want her to stay
We had the OT visit this morning and mum is going to get a standing hoist - hurrah! The OT said it's worth a try and if it doesn't work with mum, then at least we'll know. I agree. It hasn't been tried yet and if it gives us a little longer of her being able to spend more time out of bed, then it will be worth it. I managed to get her out of bed this morning and onto the commode, but now she's quite weak again, so she'll be going back to bed shortly.
It seems that there will be no 'bounce back' for mum as there as been so many times before, and I guess I am grateful for the times that did happen. I think now we have to face the reality of the dementia progressing, which of course I knew all along was coming. Still hard to see and accept though.
It seems that there will be no 'bounce back' for mum as there as been so many times before, and I guess I am grateful for the times that did happen. I think now we have to face the reality of the dementia progressing, which of course I knew all along was coming. Still hard to see and accept though.
I did three bed changes myself today as I only have a morning care call on Thursdays. Horrendously difficult on my own, even in spite of a new technique of rolling mum with the aid of a draw sheet. So, I have asked for the care calls to be upped. We will have morning and evening calls every day now, plus my usual longer sessions on two weekdays. This, plus the imminent arrival of the standing hoist, may just allow me to carry on at home for a bit longer. I was wondering to myself how much harder it can get than her being bed bound and being changed in bed 4 times a day. I can't think how it can. Her decline will make it harder for me emotionally of course, but I have already discovered that mum being in bed all day means more free time for me to go out in the garden for a few hours, or to watch something on TV. Still trying to draw out some positives from a fairly grim situation!
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