Can't take much more, Dad nor me

[Moonflower]

It is dreadful. I'm so sorry - for all of you.

But from your posts it really sounds as if caring for him will be too much for your mum. She needs some unbroken sleep.

Maybe if you could focus on looking for the best possible care facility? Some are really caring places, with lovely staff. No, he won't have your mum with him at night but he won't be on his own, and the staff voices will become familiar to him. A good care home will do everything they can to support him.

It's not what you want for him, and I can so sympathise with that. But it may be the least worst alternative.

 

[KentJude]

Stephanie I'm really sorry for all that your family's going through too. It's agony isn't it, I'm sure your dad's decline is mainly due to the hospital stay, my mum declined so fast when she was in, but 2 months later, from being at home she's a different person, all the weight back on and more, and much brighter and happier.

But, the big but is that it takes so much work to get there and your mum obviously can't manage it even with carers.

Could you not as moonflower suggests, find the best care home for him and think of it as short term rehab, with the view that if he gets stronger he can then be brought home? The problem is the distance to the home and that your mum can't visit him too often I guess. Oh it's so hard I really feel for you, it broke my heart every time I took her into care and may well have to in the future so I know how you feel.

A big hug

Jude

 

[AntheaC]

not easy

this is really difficult because it not aonly are you coping with the here and now problems of the hospital but you are trying to think ahead. One thing I've learnt from expereince is that even if you do this things can change over night and all that energy is just wasted -so focus on what you can do to help today's problems first.
have you thought maybe he might see you or your mum as the person eh was callign out for? my mum often calls my dad 'daddy' meaning her father which shows she sees him as comforting and caring for her so that could be a positive thing that he feels cared for most of the time and just misses that at night when he feels most vulnerable. Hospitals are in my opinion necessary evils and ai say that even though my husband worked in one for years. No one wants to be in there and it is even worse for a dementia sufferer as they need familair faces and shift work means they cant get that and everything ahppens fast around them so they get confused. If they can get to the bottom of his health issues it might help to get him to respite where they know how to cope with dementia. I hope things settle down for you soon. I remember how exhausting and worrying it was when mum was in hospital - and we were trying to catch up fast on everything whne people assumed you knew what was ahppening.

 

[AntheaC]

Yes, Moonflower, that is a probably a good idea, my only concern with that is, the available spots are permanent, not respite. If we put him in respite it would be somewhere else and I'm worried that moving him from hospital to respite to permanent care would be too unsettling.

sorry I just noticed this part of your reply - this puts a different spin on things. I realy would suggest you sit down with your mum and the SW and the rest of the team and work out if they can supply care so you can take him home. That's what we did. We have carers morning and night and once the infection settled and her general health improved and we learned how to do things it has been fine. Could you cope with this? If it is long term care only and you don't want this it may be difficult to get him out of the sytem.

 

[turbo]

Hello Stephanie, Just catching up on news of you and your mum and dad. (I've been away for a couple of days visiting mum in her care home 220 miles away).
It must be so hard when you have such difficult decisions to make. It does sound as if your dad needs more care than your mum is able to give (unless of course your mum can have carers to help for a lot of the day and at night.) Thinking of you all.


turbo

 

[starryuk]

Hello Stephanie,

I read your post earlier and it has been in my mind all day. This is a really difficult situation, isn't it. Would your mum be able to look after your dad if she had a lot more help? Of course I am on the other side of the world,so don't know your system, but my uncle has a full time live in carer to help him with my aunt.

He says it is marginally cheaper than a CH. For him it means he can go out every day and also has some company himself. He has to be home for a 2 hour lunch break, and then is on duty again in the evening when my aunt has been put to bed. The carer is the housekeeper in effect. Actually there are two. They do alternate 3 week shifts.

Then I was wondering if there is any respite place suitable for both of them to go together for a short time...probably not I guess.

I can really understand that you want your dad back at home if at all possible. Perhaps there is a way to arrange it...surely there must be...

x

 

[lilysmybabypup]

It is dreadful. I'm so sorry - for all of you.

But from your posts it really sounds as if caring for him will be too much for your mum. She needs some unbroken sleep.

Maybe if you could focus on looking for the best possible care facility? Some are really caring places, with lovely staff. No, he won't have your mum with him at night but he won't be on his own, and the staff voices will become familiar to him. A good care home will do everything they can to support him.

It's not what you want for him, and I can so sympathise with that. But it may be the least worst alternative.

Yes Moonflower, I have used those exact words to someone else here this week, the least worst, it is often the only thing we can do, isn't it? Thank-you for your help.

Stephanie I'm really sorry for all that your family's going through too. It's agony isn't it, I'm sure your dad's decline is mainly due to the hospital stay, my mum declined so fast when she was in, but 2 months later, from being at home she's a different person, all the weight back on and more, and much brighter and happier.

But, the big but is that it takes so much work to get there and your mum obviously can't manage it even with carers.

Could you not as moonflower suggests, find the best care home for him and think of it as short term rehab, with the view that if he gets stronger he can then be brought home? The problem is the distance to the home and that your mum can't visit him too often I guess. Oh it's so hard I really feel for you, it broke my heart every time I took her into care and may well have to in the future so I know how you feel.

A big hug

Jude

Thanks Jude, it will be too much fro Mum the way he is right now, and I can't imagine how we would cope. If it was a tiny frail woman we were caring for it would be a little easier, but he is such a tall and heavy man, even though he is just skin and bone, it's a lot of bone to move around. Thanks for the hug.

this is really difficult because it not aonly are you coping with the here and now problems of the hospital but you are trying to think ahead. One thing I've learnt from expereince is that even if you do this things can change over night and all that energy is just wasted -so focus on what you can do to help today's problems first.
have you thought maybe he might see you or your mum as the person eh was callign out for? my mum often calls my dad 'daddy' meaning her father which shows she sees him as comforting and caring for her so that could be a positive thing that he feels cared for most of the time and just misses that at night when he feels most vulnerable. Hospitals are in my opinion necessary evils and ai say that even though my husband worked in one for years. No one wants to be in there and it is even worse for a dementia sufferer as they need familair faces and shift work means they cant get that and everything ahppens fast around them so they get confused. If they can get to the bottom of his health issues it might help to get him to respite where they know how to cope with dementia. I hope things settle down for you soon. I remember how exhausting and worrying it was when mum was in hospital - and we were trying to catch up fast on everything whne people assumed you knew what was ahppening.

Yep, hospital is the worst place for dementia patients. You are making a lot of sense. Mum and Dad started calling each other Mummy and Daddy when I was born, and have never used their names. Dad also calls my sister and me Mum as well now since he doesn't recall our names and maybe we all mean the same to him, the comforting woman who love him and care for him. Thanks for your thoughts.

Yes, Moonflower, that is a probably a good idea, my only concern with that is, the available spots are permanent, not respite. If we put him in respite it would be somewhere else and I'm worried that moving him from hospital to respite to permanent care would be too unsettling.

sorry I just noticed this part of your reply - this puts a different spin on things. I realy would suggest you sit down with your mum and the SW and the rest of the team and work out if they can supply care so you can take him home. That's what we did. We have carers morning and night and once the infection settled and her general health improved and we learned how to do things it has been fine. Could you cope with this? If it is long term care only and you don't want this it may be difficult to get him out of the sytem.

Don't think we could get full-time care at home, it is not really possible here unless you want to pay an enormous amount of money. There is a higher care package but that would take some time to acquire and get going which wouldn't help with his immediate care. Thanks

Hello Stephanie, Just catching up on news of you and your mum and dad. (I've been away for a couple of days visiting mum in her care home 220 miles away).
It must be so hard when you have such difficult decisions to make. It does sound as if your dad needs more care than your mum is able to give (unless of course your mum can have carers to help for a lot of the day and at night.) Thinking of you all.


turbo

Oh turbo, so far away for you, it must be even harder when there is so much distance. I'm so sorry. I should not complain when we would be looking at places we could easily get to each day.Thanks for your thoughts.

Thanks to all, just got off the phone from our Alz Society helpline and we really just need to face the inevitable since there are no guarantees here. I think we will discuss things with the Dr and social worker and see where we go from there, probably some respite and then if things don't improve, and even of they did, Mum has honestly done beyond all she could for a long time, we will need to look now for a permanent place. Just suffering from a bit of a broken heart as I face what I know will be the outcome of all this horrid disease has in store.

Thanks for your care,
Stephanie, xxx

 

[Big Effort]

Hi Stephanie,

I am thinking of you today, as you make these painful decisions.
Me too, I go to work with a heavy heart, knowing I cannot continue to care for Mum as Dementia is ruling our roost - three of us are being driven demented by it.
Poor Mum. She thinks I am her jailer, and it isn't me, it's her disease.
I think she hates me. All this is beyond my wildest imaginings, and certainly not the 'reward' I expected for stepping in to care for her.
Mum doesn't want 'care' she wants her old life back.
I understand that, but it is beyond my power.

So Stephanie, at least your Mum knows she can't do it. Take comfort from that, as there are other spouses here who cannot let go, and they both suffer endlessly. Not saying your Mum isn't suffering, but she does realise her limits - no dementia there, clearly, as she is rational and clear of mind.

Walk tall brave soul. May today be good to you. Love BE

 

[starryuk]

Hi Stephanie,

Just thinking of you. Looks as though you have made the decision. Heartbreaking as it is, it does seem the least worst option. You are fighting so hard for your dad...and for your mum too.

You will make it work I am sure. It will be the end of an era in a way, but everyone, including your dad hopefully will benefit in the long run from this new life.

Keep strong,

xx

 

[lilysmybabypup]

Hi Stephanie,

I am thinking of you today, as you make these painful decisions.
Me too, I go to work with a heavy heart, knowing I cannot continue to care for Mum as Dementia is ruling our roost - three of us are being driven demented by it.
Poor Mum. She thinks I am her jailer, and it isn't me, it's her disease.
I think she hates me. All this is beyond my wildest imaginings, and certainly not the 'reward' I expected for stepping in to care for her.
Mum doesn't want 'care' she wants her old life back.
I understand that, but it is beyond my power.

So Stephanie, at least your Mum knows she can't do it. Take comfort from that, as there are other spouses here who cannot let go, and they both suffer endlessly. Not saying your Mum isn't suffering, but she does realise her limits - no dementia there, clearly, as she is rational and clear of mind.

Walk tall brave soul. May today be good to you. Love BE

BE,
I'm the silly one who can't let go, and, while Mum is being so stoic and pragmatic, I know she's feeling the missing soul.

I actually keep feeling like it would be easier to let go if he hated us a little bit, but, although he does get irritable and cross with us for no good reason, he still says he loves his girls and his lovely mummy.
I'm so sorry your lives are feeling so wretched right now, yes, sometimes it really feels like there's little reward for caring with love, but I am glad I had so many close and wonderful times with Dad while caring. In that respect I know I am indeed fortunate, but I really don't think she hates you, I think her dementia hates everybody, including herself, and you are the nearest target on whom she can unload. It would be so hard to bear the brunt of all the frustrations that dementia brings, I think it's soul destroying, isn't it?

Thank you for your continuing support, it really makes such a difference, so somebunny must love you. xxx

 

[lilysmybabypup]

Hi Stephanie,

Just thinking of you. Looks as though you have made the decision. Heartbreaking as it is, it does seem the least worst option. You are fighting so hard for your dad...and for your mum too.

You will make it work I am sure. It will be the end of an era in a way, but everyone, including your dad hopefully will benefit in the long run from this new life.

Keep strong,

xx

Yes, starryuk, spoke with dr this evening and she firmly believes he has had a sudden decline and is unlikely to bounce back. She said that if we try to save Dad we could lose Mum, but knows that it has been such a pervasive part of our lives, that we will struggle to accept it. She insists that, while it will be hard for Dad at first, it will absolutely get better for him. She said when she popped in the other evening she touched his arm, said hello, and he took her hand and said hello mum. She said he will soon just need the comfort and security of anybody who offers it. That in itself is heartbreaking.

Thanks for thinking of us and your wish for strength.

Stephanie, xxx

 

[Moonflower]

Oh Stephanie, to be honest I was thinking that this might be the way it goes - he may get to the point where any gentle carer with a kind voice becomes a lovely mummy.
I was afraid that this would upset you terribly - but whilst it would be very distressing, it might be the kindest outcome for him.

I don't know if this is any comfort, but when I found the care home that my mother is now in, I felt so so much better - because it really is a place of care, and the staff are very kind and thoughtful. My mother would rather live with me, and can be very grumbly about the care home - but whilst some elements of the care there can NEVER be the same as being at home, there are some things which they deal with so very much better than I could ever hope to. I so hope you can find a place you are content to trust with the care of your father.

 

[60's child]

Hi Stephanie
I have not been on the forum for a few days and I was so sorry to read your post. It is something I am dreading having to face with my own Mum. I can imagine how heartbreaking this must be for you. I have read some posts on here from carers who have also faced this heartbreaking decision. Some have said that once the initial sadness was over (as much as it ever can be) it meant that they were able to spend more quality time with their loved one as they were releived from the burden of physical caring. Please take heart from the fact that you have done so much for your Dad and he has been at home with this awful disease for a very long time. You and your Mum have done so very well in caring for him.
Thinking of you all
Dee x

 

[lilysmybabypup]

Thank-you Moonflower and Dee, your kind and sensible words are such a help. Isn't it funny how we are so good at giving comfort and advice to others but still struggle to face the same decisions? I'm the most rational person when I reply to others, but just a bit of a mess myself.

So glad you found a lovely spot for your mum, Moonflower, half the battle, isn't it? I'm feeling a bit overwhelmed by that prospect, how to weigh up the tone and feel of a place, against location. It's tricky because Mum doesn't drive and if she wants to go daily it means I will need to take her and she's concerned that it will continue to interrupt my life. Even a good one that's a few minutes' drive from her is a half hour, 2 bus ride from her house, how silly.

Hope all is well as you go into your evening, dear ones.

Stephanie, xxx

 

[angecmc]

Hi Stephanie, sorry to hear you are at the stage of having to go down the carehome route, we have just arrived there with my Mum, she has been in a lovely carehome now for just over a week, still asks every day why she is there and when can she go home and she needs to be with her husband. My Dad, bless him,insists on visiting every day, I take him in the car, like the home you describe, this one is only a two minute drive from his home, but a couple of buses and over half an hour ride if he makes his own way, I pick him up at 9am drop him at the care home, he stays with Mum all day, they let him have lunch with them and I then turn up at 3pm to visit Mum for an hour ready to take Dad home at 4pm. She hates it when we go, but Dad admitted to me that he is finding it much easier being a visitor rather than a carer, yes he was lonely and sad when she first went in,she was in respite at another home for nearly two months before we got this permanent move, but he realises now that he felt even lonelier when he was looking after her at home as at that time she was refusing to believe that he was her husband. Since being at the home, she recognises him most days. I dont think she will ever be happy wherever she is, but I know she is well cared for and Dad has chance to relax in the evenings. I dont mind taking him every day and picking him up, because I too know that both of them are safe and acting as a taxi service is now the only thing I have to do for them apart from love them dearly. I wish you good luck xx
Ange

 

[lilysmybabypup]

Thanks for sharing your experience, Ange, sounds exactly like it would be for us too. Not sure that Mum would stay there all day every day though, she's such a home person, never one for going out. But I know she will go as often as possible. I'm hoping that between the family we can cover all days. Not sure how he will be if he sees us every day though, whether that will make things easier or harder.

Today I walked in the hospital room and he was sitting alone in dimness. He was so overwhelmed to see me, he grabbed my hand and kissed it, it was more than my heart could bear. He was also quite damp, bed not changed, just a mess, hair all greasy. Then after a short while he complained his back was so itchy, and he had been in the bed for a couple of days. I talked to him about needing a shower and maybe try to walk to the chair, his walking has been dreadfully impaired while in hospital. He was so reasonable, said he wanted to do all those things, shock, horror! Then the nurses came in and one said a cheerful hello to him, he turned and gave her a beaming smile and hello. She was so surprised because he has been either grumpy, miserable, or sleepy every day, it was like a new man, or actually, a former man, my dad before hospital. We managed to get him in the commode chair for the shower and he wasn't completely happy about being cold but he wasn't difficult. Once he was fresh, clean, dressed, and sitting in the chair with some calamine lotion on his itchy back he was my dearest dad. He sat and chatted with me, as we would before hospital, drank his cup of tea enthusiastically and ate some biscuits. I started to wonder if he was trying for a last minute save from going into a CH, even though he doesn't know he's going. I can't imagine he was suddenly over the delirium or infection because they stopped the IV antibiotics 3 days ago and switched to a syrup one. He stayed like this into the late afternoon and the evening nurse came in with his tablets, hoping he might take them for me more easily (not always), but he took them all without any fuss and even the syrup which yesterday was, "horrible and too sweet, not having any more of THAT!" He still only ate 2 spoons of dinner and half a cup of tea and then got sleepy. I crept out to go home because he's always worse if we say goodbye, gets so upset and won't let us go. Still feel so upset about him going into care since he is so attached to us, but I know Mum just can't do it any more.

Every day is a new person in Dementia Land.

Stephanie, xxx

 

[angecmc]

Hi Stephanie, you are so right everyday is a different person in dementia land, it is a vile disease. You have so much on your plate at the moment, I really feel for you, I was fortunate in that so far my Mum has not had to go to hospital, it sounds horrendous. I wish my Dad would not go every day to see Mum, but it took me so long to persuade him that he could no longer cope with the person she had become, that I dont feel I can interfere with the new routine he has set himself up with and at the moment it is working for him, of course it falls apart if and when I can not take him for whatever reason. I found that interesting when you said your Dads behaviour was as if he was tryingto prevent the inevitable move to carehome. Sometimes when I visit my Mum and she is having a lucid couple of hours, I worry that I have forced the move too soon, however, she soon displays behaviour that tells me that the decision was correct, but it is very hard when those rare lucid moments come. Take care xx
Ange

 

[60's child]

Hi Stephanie
I have been pondering your possible transport issue with regard to visiting your Dad. In my local area there is a support scheme that supplies transport for elderly people who have to go for hosptal visits, appointments etc It is a free service with just a small charge for petrol. Not sure whether you might have anything like this local to you? We live in a rural area but my mother in law lives in a town and there is a similar scheme there. Might be worth looking into?
Good to heat that your Dad has improved slightly., I do hope you and your Mum are bearing up.
Dee x

 

[lilysmybabypup]

Yes Ange, the lucid moments make me think I can bundle him up and take him back home and Mum and I can continue to care for him. In fact, I know that he would be so much better at home, he would eat more, we could cajole him to have a shower, pat his cat, Tessie, who he loves, and be comfortable in a normal bed where he fits. But Mum has really had all she can take, and I'm so troubled trying to balance their individual needs.

Dee, thanks for that suggestion, I can see she could get some form of community transport if she is caring for Dad at home I think, or is deemed frail herself. Not sure if she would qualify simply from her age, although she does have a very bad back so maybe we could get it if she was assessed for a care package. And if Dad is no longer at home, she isn't classified as a carer any more. They must have a way to exclude people wherever possible.

My sister has gone in today and left her 23 month old with her MIL for the day. Once again, she arrived to find Dad in a urine soaked bed and gown, asleep, no pad on just alone!!! We are convinced the cow of a nursing manager has decided the staff are to neglect him in order to hasten us taking him out. She was the one I spoke to about getting 1:1 and only did it after he had a fall. And even then she stopped it after 2 days because she wont spend the money. I think she has decided we are difficult and is being difficult back, quite unpleasant, last night when I was out of his room I gave her a frosty hello and she answered similarly, then she walked over to Dad's door and looked inside the room for a minute, not sure what that was about. The nurse seemed cagey today when my sister questioned his state, and said they had to change him because he was wet, and he wouldn't let them put on a new pad or change the bed or shower him, so the outcome is him being left that way.

My sister managed to coax him to get in the commode and helped to shower him. He is resistant to so much because he is terrified he will fall all the time but he isn't getting any time to maybe regain some mobility and confidence.

We are having trouble getting a chance to look at homes because one of us is always at the hospital and my sister works 3 days a week. We can't take him home, and even respite is very hard to find unless we take a spot in a couple of places the social worker says are a bit less desirable in terms of care. We want him out as soon as possible but I really worry that they are forcing the issue and we have nothing available yet. Today is supposed to be my break day from hospital but I've done nothing but try desperately to see what I can do to get him somewhere, but it's weekend and can't anywhere. I can't face him there for another week and can't get him out yet.

Desperately unhappy.

Stephanie, xxx

 

[turbo]

Hello Stephanie, I can empathise with how unhappy you are. My mum went from hospital to care home. Before that she hadn't had any outside care at all. We were desperate to get mum out of hospital. But it's so important that you find the right care home for your dad even though I know how desperate you are to get him out of hospital. We put mum's name down on several waiting lists and I rang each care home every day. Thankfully a place became available after a few weeks. Mum has been in her care home for three and a half years.
I am thinking of you and your family.


turbo