Any tips on how to keep going?!?

[HartleyHugs]

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 🙏🏻

 

[Kevinl]

No help at all from me, just keep on doing it, that and thank you from me. K

 

[HartleyHugs]

No help at all from me, just keep on doing it, that and thank you from me. K

Thank you, that's a really kind thing to say.

 

[Kevinl]

It is what it is, they looked after you as a child and I had the pleasure of looking after my mum too, I was there for her just like she was there for me too. K

 

[Louise7]

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.

Hello @HartleyHugs sorry to hear about your mum, I think this 'roller coaster' stage is definitely the hardest so it's understandable that you are struggling with your feelings and I really feel for you going through this. Your comment above about visiting twice a week "as you're meant to do" jumped out at me as I've never heard that said before and wonder where it came from? I do think that sometimes people place themselves under unnecessary pressure to visit regularly for a variety of reasons. I have spent over five years visiting my mum in care homes and at the start I visited a few times a week but as mum became more settled, and when I was confident that she was safe and being looked after, I tended to visit just once a week. I work full time and also have some health problems so visiting more frequently wasn't sustainable either over the long term.

I've spoken to lots of other relatives over the years and some have visited daily, some weekly or twice weekly, some less frequently and some residents had no visits at all, and during Covid lockdown myself and other relatives couldn't visit for the best part of a year. I do think that sometimes people visit because they think that they should, and are worried about what the staff or other relatives might think if they don't visit frequently, but from my experience nobody is judging anyone else. You should visit as often as is right for you, especially if visiting is not doing you or your mum any good. This stage is so mentally and physically draining, and I know there is the often mentioned phrase "you need to look after yourself" but you really do, you don't want to be running on empty or end up ill yourself. The staff will let you know if you are needed so do have a think about reducing your visits, if only for a short while. Ultimately you need to do what you feel comfortable with but guilt is such a negative emotion, try not to let it win.

 

[HartleyHugs]

Hello @HartleyHugs sorry to hear about your mum, I think this 'roller coaster' stage is definitely the hardest so it's understandable that you are struggling with your feelings and I really feel for you going through this. Your comment above about visiting twice a week "as you're meant to do" jumped out at me as I've never heard that said before and wonder where it came from? I do think that sometimes people place themselves under unnecessary pressure to visit regularly for a variety of reasons. I have spent over five years visiting my mum in care homes and at the start I visited a few times a week but as mum became more settled, and when I was confident that she was safe and being looked after, I tended to visit just once a week. I work full time and also have some health problems so visiting more frequently wasn't sustainable either over the long term.

I've spoken to lots of other relatives over the years and some have visited daily, some weekly or twice weekly, some less frequently and some residents had no visits at all, and during Covid lockdown myself and other relatives couldn't visit for the best part of a year. I do think that sometimes people visit because they think that they should, and are worried about what the staff or other relatives might think if they don't visit frequently, but from my experience nobody is judging anyone else. You should visit as often as is right for you, especially if visiting is not doing you or your mum any good. This stage is so mentally and physically draining, and I know there is the often mentioned phrase "you need to look after yourself" but you really do, you don't want to be running on empty or end up ill yourself. The staff will let you know if you are needed so do have a think about reducing your visits, if only for a short while. Ultimately you need to do what you feel comfortable with but guilt is such a negative emotion, try not to let it win.

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.

 

[leny connery]

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 🙏🏻

 

[Collywobbles]

I agree with Louise7 that you need to rethink your visiting expectations. If they help neither your Mum nor you, what’s their value to anyone involved? Your Mum is being provided with the best care practically possible. Go easy on yourself.

 

[Louise7]

I'm pleased that my post has helped @HartleyHugs you can tell from your posts how much you love your mum, and visiting less often won't change that, or mean that you care less. It is easy to fall into a routine which then becomes difficult to break, but nobody will think any less of you if you choose to spend a little more time on you, and your young son, during such a difficult time.

 

[leny connery]

I am sorry, but really this kind of horrible story makes me again believe it is kinder to free such person from living a half and horrid life. I signed for euthanasia to be legalised. I do not believe any of us here would choose to live like your mum. What a torment. For mum. for you. It is just not fair. I hope the pro life people in this group do not react angrily to my opinion. It is just my opinion and I understand others might not feel the same. So very sad for you and sorry i have n answer, just please do not feel guilty about not seeing her when doing so actually are not beneficial to either of you

 

[HartleyHugs]

I am sorry, but really this kind of horrible story makes me again believe it is kinder to free such person from living a half and horrid life. I signed for euthanasia to be legalised. I do not believe any of us here would choose to live like your mum. What a torment. For mum. for you. It is just not fair. I hope the pro life people in this group do not react angrily to my opinion. It is just my opinion and I understand others might not feel the same. So very sad for you and sorry i have n answer, just please do not feel guilty about not seeing her when doing so actually are not beneficial to either of you

Thank you, I agree and know my mum would too as we talked about this when my nana was so ill, which at times probably causes me such frustration.

 

[HartleyHugs]

I'm pleased that my post has helped @HartleyHugs you can tell from your posts how much you love your mum, and visiting less often won't change that, or mean that you care less. It is easy to fall into a routine which then becomes difficult to break, but nobody will think any less of you if you choose to spend a little more time on you, and your young son, during such a difficult time.

That's totally what it is, it's a routine that I'm in, and thinking about breaking it has caused me so much worry, but everyone's comments here have really helped.

 

[HartleyHugs]

I agree with Louise7 that you need to rethink your visiting expectations. If they help neither your Mum nor you, what’s their value to anyone involved? Your Mum is being provided with the best care practically possible. Go easy on yourself.

Thank you, what a good way to put it visiting expectations, I think even now I still expect something different. Everyone's comments are definitely helping me think about going easy on myself

 

[HopefulDaughter]

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 haven’t got any tips but I just wanted to say you are doing all you can for your mum, and you’re doing amazingly. Don’t forget to take care of yourself, this is the hardest thing to go through. I’m sure she would say the same if she was well. Take care.

 

[Firecatcher]

I am sorry, but really this kind of horrible story makes me again believe it is kinder to free such person from living a half and horrid life. I signed for euthanasia to be legalised. I do not believe any of us here would choose to live like your mum. What a torment. For mum. for you. It is just not fair. I hope the pro life people in this group do not react angrily to my opinion. It is just my opinion and I understand others might not feel the same. So very sad for you and sorry i have n answer, just please do not feel guilty about not seeing her when doing so actually are not beneficial to either of you

I agree with you. It’s a torturous existence not a life. I also agree with assisted dying although it’s unlikely to ever be an option for people with dementia.

 

[Sterlingtimes]

A nurse described my mother as "a tough old bird" this week, which is a perfect summarisation. At age 95, she has never had cancer or any form of organ failure, but now she is bedbound with severe musculoskeletal failure.

These are not really tips but critical things that I have learned over the past four months of Hell:

[1] Do not expect the telephone to ring, informing you of the worst.

[2] Do not expect to receive any information from clinical staff. They are difficult to get hold of and will refrain from providing information.

[3] Do not expect matters to progress quickly. There may be a long plateau.

[4] The patient may appear skeletal to the eye but will survive with very little food and liquid.

[5] I have not taken a break in weeks. For my own sake, I am now taking a week-long break from visiting.

 

[SkyeD]

Enjoy your week @Sterlingtimes
S x

 

[HartleyHugs]

A nurse described my mother as "a tough old bird" this week, which is a perfect summarisation. At age 95, she has never had cancer or any form of organ failure, but now she is bedbound with severe musculoskeletal failure.

These are not really tips but critical things that I have learned over the past four months of Hell:

[1] Do not expect the telephone to ring, informing you of the worst.

[2] Do not expect to receive any information from clinical staff. They are difficult to get hold of and will refrain from providing information.

[3] Do not expect matters to progress quickly. There may be a long plateau.

[4] The patient may appear skeletal to the eye but will survive with very little food and liquid.

[5] I have not taken a break in weeks. For my own sake, I am now taking a week-long break from visiting.

Thank you for these, I've never heard of musculoskeletal failure. The staff say similar things about mum, even the GP was amazed she was still here. I gave up on the early morning phonecalls a long time ago, but still take the phone up to bed every night....just in case.

 

[HartleyHugs]

I haven’t got any tips but I just wanted to say you are doing all you can for your mum, and you’re doing amazingly. Don’t forget to take care of yourself, this is the hardest thing to go through. I’m sure she would say the same if she was well. Take care.

Thank you for replying, even that helps. I'm on my way to see her now, then for my sake moving forward I'm going every Saturday, I can then go after I've cared for dad as it's washing and shopping day for him. Then I know the rest of my week is mine, probably spent doing housework or homework with my son but I have the option to do nothing or something exciting if I feel like it

 

[Sterlingtimes]

Thank you for these, I've never heard of musculoskeletal failure. The staff say similar things about mum, even the GP was amazed she was still here. I gave up on the early morning phonecalls a long time ago, but still take the phone up to bed every night....just in case.

"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.