Any tips on how to keep going?!?

[Ellie2018]

Thank you for this, it really made sense. I also help care for my dad who had a huge stroke almost 6 years ago so at times I feel as though all I'm doing is caring for someone but not me. I suppose my comment came from that feeling. But your words really hit home, my nana (mums mum) also had Alzheimer's and I know she really struggled to visit her at the end and she would only go once a week/10 days. I also work full time and have a 13 year old son, so maybe this is me finally realising that at times I have to stop and take a break and know that I love my mum with all my heart but at times I have to step back, she is well cared for in the nursing home and they will call if something happens. I think that because it's been the same for such a long time I struggle to talk to my family or friends as I think that maybe they've heard it too much from me which is why this forum is so good to be able to just open my heart and know others understand.

I hope you’re able to re-read these words when you find it hard as they make so much sense. I’m sure your mum wouldn’t want you to put yourself under this pressure but would want you to take care of yourself and her grandson.

 

[luggy]

@HartleyHugs I completely understand your position. My mum is in the same state as yours and I used to visit her at the care home twice a week. This was manageable, as the care home was just a short 20 minute drive away and I would usually incorporate it with a trip to the supermarket or something similar. However, the care home closed down and the next nearest nursing home was much further away, which meant that a visit to see mum writes off an entire day so, for the sake of my own sanity, I've cut the visits down to once a fortnight and I feel much better for it. I felt a bit guilty to start with, but not so much now. Mum doesn't know who I am, and is either asleep or unsettled when I do visit. I don't stay very long - just long enough to make sure that her needs are being met, and that she is comfortable and safe. I try and ask the care and nursing staff how mum has been, but they don't give much away, replying with stock answers which tell you nothing.

Because I don't visit quite so often, I have noticed more of a deterioration during the intervening weeks, and I'm praying that her suffering will soon come to an end, but I fear that poor mum is stuck on the 'eternal plateau' - a phrase recently coined by someone on this forum.

Look after yourself x

 

[HartleyHugs]

"Musculoskeletal failure" is my term to describe my mother's condition. She has very serious degeneration in the lower spine and a fractured hip that has not united even two years after surgery. As a consequence of being bedbound, her muscles have also effectively failed. She lies, in pain, unable to move with her one knee locked in a bent position. She wants to die.

This sounds like my mum, some days her legs are bent so high her knees touch her chin, the carers have to physically try and move her legs out when they need to move her.

 

[HartleyHugs]

I hope you’re able to re-read these words when you find it hard as they make so much sense. I’m sure your mum wouldn’t want you to put yourself under this pressure but would want you to take care of yourself and her grandson.

Thank you @Ellie2018 your last sentence really hit home, mum loves her grandson and I have to remember that he needs me more than she does

 

[HartleyHugs]

@HartleyHugs I completely understand your position. My mum is in the same state as yours and I used to visit her at the care home twice a week. This was manageable, as the care home was just a short 20 minute drive away and I would usually incorporate it with a trip to the supermarket or something similar. However, the care home closed down and the next nearest nursing home was much further away, which meant that a visit to see mum writes off an entire day so, for the sake of my own sanity, I've cut the visits down to once a fortnight and I feel much better for it. I felt a bit guilty to start with, but not so much now. Mum doesn't know who I am, and is either asleep or unsettled when I do visit. I don't stay very long - just long enough to make sure that her needs are being met, and that she is comfortable and safe. I try and ask the care and nursing staff how mum has been, but they don't give much away, replying with stock answers which tell you nothing.

Because I don't visit quite so often, I have noticed more of a deterioration during the intervening weeks, and I'm praying that her suffering will soon come to an end, but I fear that poor mum is stuck on the 'eternal plateau' - a phrase recently coined by someone on this forum.

Look after yourself x

So sorry to hear that you had to move your mum that must have been so hard, I'm already feeling guilty about not going tomorrow but I'm going to try and see how I do.

 

[Sterlingtimes]

This sounds like my mum, some days her legs are bent so high her knees touch her chin, the carers have to physically try and move her legs out when they need to move her.

Hello HartleyHugs. This is very sad to watch, isn't it? I discovered that they are "sedating" my mother with liquid morphine in the morning just to clean her. My mother has just enough movement in her one knee to drag her foot up and down the bed repeatedly by a few inches, causing a problem bedsore in her foot. She lies to one side and is unable to turn.

 

[Banjomansmate]

Hello HartleyHugs. This is very sad to watch, isn't it? I discovered that they are "sedating" my mother with liquid morphine in the morning just to clean her. My mother has just enough movement in her one knee to drag her foot up and down the bed repeatedly by a few inches, causing a problem bedsore in her foot. She lies to one side and is unable to turn.

So, so sad.
We’d be prosecuted if we left an animal like this!

 

[SweetSioux]

Hi, it's been a while since my last post but amazingly mum is still hanging in. Brief update, mum is on her fourth end of life path, but I'm really struggling now. She's been kept in her bed now since October as she's so frail that using the hoist is not an option, and she's unable to sit in a chair because her legs get stuck in contractures and they get stuck almost up to her chin at times!
We went through a long period of time where she hardly ate, but it seems as though since she was taken off her medication (still on a pain patch) she seems to have her appetite (for all that it is) back. She needs to be fed but she lashes out, scratching, trying to grab the spoon, today when I tried to help soup landed on her leg, the pillow and on me! She's lost that much weight even while eating the small bits they feed her that you can feel all her bones, they can't weigh her so they measure her upper arm and the last time it was 13.5cm in diameter, which is smaller than my wrist!
Her language is so garbled, you might catch a few seconds of comprehension but the rest is either swearing, or I don't want to go and something that's "Inga" (no idea??).
I try to speak to the care home staff and they're just like oh isn't it great that she's eating a bit, or oh listen to the swearing! Today when I said that she must be desperate to sit outside is there anything they can do they said no because they would need to increase her pain patch then she'd be too sleepy to eat! So basically they're just keeping her in bed and trying to put food in her mouth! What life is that???
But it's just so hard as her daughter, I feel guilty because I am really struggling to visit now, both physically and mentally it's exhausting! She's drawn blood several times with the scratching, and has bent fingers back so far it's made me cry out in pain. I try to visit twice a week because isn't that what you're meant to do, but I honestly think she's worse when I'm there, but then I feel guilty if I think I'll just go once a week. She's been in the care home now almost 2 and a half years and it just gets worse with every visit.
I just don't know what to do any more? I've tried reading to her and get sworn at, occasionally music works but only on a good day, I try to sit quietly and she slaps me.
Any ideas right now would be great 🙏🏻

I just finished reading a book called "Walking with Fay" [My Mother's Uncharted Path into Dementia] by Carolyn Birrell. I found a good used copy on Ebay very inexpensive. I suggest you get this book and read it as your journey with your mother sounds much like Carolyn's memoir. I think you will glean some ideas that will help you and also help you to not feel so guilty. I would suggest you greet your mother with a pleasant voice when you arrive and sit far enough away from her that she can't hurt you. You have my sympathy as my respect as you have endured so much.

 

[SweetSioux]

So, so sad.
We’d be prosecuted if we left an animal like this!

Get your mother a set of medical sheepskin pads for her bed and/or wheel chair. Also heel covers or anywhere she has or might develop a pressure sore. It's much better to prevent than to treat so if you can prevent further pressure sores it will save your mother much pain and grief. There are also pads that can go over the mattress under the bottom sheet that circulates air that also helps -- but please do get at least one set of medical sheepskin pads for your mother and other (heel pads, etc.) she might need. They are washable and you can always have a clean set for her use in bed and chair if she's ambulated in wheel chair or sits in a chair at all. This was a live and learn situation that I learned many, many years ago. Whenever a family member or friend becomes bedridden or is spending a great deal of time in bed I gift a set to them. Has been very good thing to gift and much appreciated. They last forever, too!

 

[SweetSioux]

PS You can google medical sheepskin pads and find resources online.

 

[HartleyHugs]

I just finished reading a book called "Walking with Fay" [My Mother's Uncharted Path into Dementia] by Carolyn Birrell. I found a good used copy on Ebay very inexpensive. I suggest you get this book and read it as your journey with your mother sounds much like Carolyn's memoir. I think you will glean some ideas that will help you and also help you to not feel so guilty. I would suggest you greet your mother with a pleasant voice when you arrive and sit far enough away from her that she can't hurt you. You have my sympathy as my respect as you have endured so much.

Thank you for this, I'll definitely look into this book. I try to keep out of arms reach but due to work and the care I do for my dad I tend to get there at meal times so help feed her and that's when she lashes at me.

 

[HartleyHugs]

Get your mother a set of medical sheepskin pads for her bed and/or wheel chair. Also heel covers or anywhere she has or might develop a pressure sore. It's much better to prevent than to treat so if you can prevent further pressure sores it will save your mother much pain and grief. There are also pads that can go over the mattress under the bottom sheet that circulates air that also helps -- but please do get at least one set of medical sheepskin pads for your mother and other (heel pads, etc.) she might need. They are washable and you can always have a clean set for her use in bed and chair if she's ambulated in wheel chair or sits in a chair at all. This was a live and learn situation that I learned many, many years ago. Whenever a family member or friend becomes bedridden or is spending a great deal of time in bed I gift a set to them. Has been very good thing to gift and much appreciated. They last forever, too!

Thank you for this, I actually use a sheepskin mattress topper when I go camping and never thought about something similar for mum, it would definitely make her more cosy, I'll look into them.

Hello HartleyHugs. This is very sad to watch, isn't it? I discovered that they are "sedating" my mother with liquid morphine in the morning just to clean her. My mother has just enough movement in her one knee to drag her foot up and down the bed repeatedly by a few inches, causing a problem bedsore in her foot. She lies to one side and is unable to turn.

Mums on a pain patch that can cause drowsiness, but I've not seen sedation being used as yet, but I will definitely look out for it now

 

[sdmhred]

Hello HartleyHugs. This is very sad to watch, isn't it? I discovered that they are "sedating" my mother with liquid morphine in the morning just to clean her. My mother has just enough movement in her one knee to drag her foot up and down the bed repeatedly by a few inches, causing a problem bedsore in her foot. She lies to one side and is unable to turn.

Oh I’m so so sorry that you have to witness your mum go through this 😢😢 May you and @HartleyHugs know that there is an army of us behind you. This is torture for all involved.

 

[Allotmemteer]

Hi, it's been a while since my last post but amazingly mum is still hanging in. Brief update, mum is on her fourth end of life path, but I'm really struggling now. She's been kept in her bed now since October as she's so frail that using the hoist is not an option, and she's unable to sit in a chair because her legs get stuck in contractures and they get stuck almost up to her chin at times!
We went through a long period of time where she hardly ate, but it seems as though since she was taken off her medication (still on a pain patch) she seems to have her appetite (for all that it is) back. She needs to be fed but she lashes out, scratching, trying to grab the spoon, today when I tried to help soup landed on her leg, the pillow and on me! She's lost that much weight even while eating the small bits they feed her that you can feel all her bones, they can't weigh her so they measure her upper arm and the last time it was 13.5cm in diameter, which is smaller than my wrist!
Her language is so garbled, you might catch a few seconds of comprehension but the rest is either swearing, or I don't want to go and something that's "Inga" (no idea??).
I try to speak to the care home staff and they're just like oh isn't it great that she's eating a bit, or oh listen to the swearing! Today when I said that she must be desperate to sit outside is there anything they can do they said no because they would need to increase her pain patch then she'd be too sleepy to eat! So basically they're just keeping her in bed and trying to put food in her mouth! What life is that???
But it's just so hard as her daughter, I feel guilty because I am really struggling to visit now, both physically and mentally it's exhausting! She's drawn blood several times with the scratching, and has bent fingers back so far it's made me cry out in pain. I try to visit twice a week because isn't that what you're meant to do, but I honestly think she's worse when I'm there, but then I feel guilty if I think I'll just go once a week. She's been in the care home now almost 2 and a half years and it just gets worse with every visit.
I just don't know what to do any more? I've tried reading to her and get sworn at, occasionally music works but only on a good day, I try to sit quietly and she slaps me.
Any ideas right now would be great 🙏🏻