Hi,
If you need some extra background, I have a thread titled, "Can't take Much More, Dad Nor Me". It's a bit long-winded but saves me going into too much detail, I'm fairly long-winded, sorry.
Dad has AD, 8 yrs, aged 86, Mum, 82 cared for him at home, with my help. Mum has developed a couple of health issues and is just tired out and had enough. Dad was hospitalised for 4 weeks after an episode if delirium, and we were looking at respite, but ended up putting him into a nursing home because he has seriously declined and is immobile now.
He still communicates well, is mostly passive but can get angry at showers or any fussing, issues that didn't happen at home.
His appetite was waning while at home, not even wanting sweet foods any more. While in hospital he was eating 2 spoons at breakfast, a cup of tea and a biscuit, no lunch, no dinner. Supplement was mostly refused too. While he went in walking with a walker, even tried to get up and leave in the first week! Had a fall in hospital and gradually stopped walking. I demanded some x-rays before he left but they refused, saying no clinical evidence to warrant it.
He has been in a nursing home for 2 weeks, about a half hour drive away, started in a locked dementia ward that distressed him greatly because he needs calm and quiet. yesterday they transferred him to an unlocked high care section, fewer staff but people have no real behaviour issues.
He seems to be asleep most of the day, refusing food, although when I ask he sometimes says yes, then opens his mouth and gets very upset when it's in his mouth, everything tastes awful, even a sip of tea. he is still asking for water, which is good. He seems very depressed, is on Citalopram to treat depression from dementia, not a chemical problem. I feel he is pining for home, and his family. I am spending every day there to try and support him and give him as much love and comfort as I can. My mum needs to rest and doesn't drive, I stay long hours and can't take her with me since she needs to be home earlier. My sister is much younger, works part time, lives further away, and has a 2 year old. My children are adults.
Basically, I am the glue holding all this together, seeing the most of Dad's needs, and possibly the most emotionally attached. Mum seems to have decided she just can't have Dad back home, she has given up, told us she has mourned for him and lost him already, even though he knows we are all his "lovey mums". He wakes every now and then and calls, " Mummy, Mummy, Mummy, where are you?" All the care staff have very heavy accents, since they seem to be the only people willing to work in this industry for the money it pays. They are nurses and RN's but it still means Dad can't understand them and won't believe they are us, which he did in hospital, he called them all Mum, meaning my mum.
To my point, sorry, I take too long. The nursing home said he is shutting down, we can't get him to eat, he seems to be sleeping all day and in pain some of the time, but can't identify it to us. We have been asked if we want to PEG feed but their opinion is he would not cope with the surgery, or any other tests or procedures to find a source of pain or indeed, to treat it. They said we should consider palliative care, providing pain relief in the form of a morphine-based med, only use necessary meds, no tests or treatments, and keep him comfortable.
I suppose we feel a PEG feed is too invasive and palliative care would be the kindest choice. I am struggling with everything, he isn't incontinent, knows he needs to go but can't call for help or go himself. If I'm not there he has just pulled down the front of his pull-ups and done it in his lap, meaning a whole change of clothes, which means lifter, stress, it is all overwhelming me. A staff member can't be watching him every second and if they try to toilet him at other times he says he doesn't need to go.
I am wondering whether any of you have experience of any of this and an opinion or advice? My mum and sister tell me I can't control everything and we need to give up on Dad, in a way. I am constantly plagued by images of him wanting us, being with strange people, he was only moved to the quiet section yesterday so he needs to get used to new people again, and I know that will happen. I'm also concerned that the other residents in that section seem to be fairly ok, walking around, sitting at the tables to eat, and I wonder how they are high care, I don't know if there are any with dementia in that section either. When they said they would move him, and said the assessment from hospital seemed to be for a different person from the man they see, and he should not be in a locked unit, I said what about his anger issues, and they said lots of high care residents have those issues, with or without dementia.
I am floundering, as usual, feeling overwhelmed and exhausted, but can't just switch it off. So far, I have been there almost every day, except for a couple of times my sister took my mum so I could stay home. I know visiting and NH isn't giving up but it feels like abandonment to me. Sorry, this seems to have chopped all over the place, giving bits and pieces and not really making myself clear, in light of the Thread Title.
Stephanie, xxx
If you need some extra background, I have a thread titled, "Can't take Much More, Dad Nor Me". It's a bit long-winded but saves me going into too much detail, I'm fairly long-winded, sorry.
Dad has AD, 8 yrs, aged 86, Mum, 82 cared for him at home, with my help. Mum has developed a couple of health issues and is just tired out and had enough. Dad was hospitalised for 4 weeks after an episode if delirium, and we were looking at respite, but ended up putting him into a nursing home because he has seriously declined and is immobile now.
He still communicates well, is mostly passive but can get angry at showers or any fussing, issues that didn't happen at home.
His appetite was waning while at home, not even wanting sweet foods any more. While in hospital he was eating 2 spoons at breakfast, a cup of tea and a biscuit, no lunch, no dinner. Supplement was mostly refused too. While he went in walking with a walker, even tried to get up and leave in the first week! Had a fall in hospital and gradually stopped walking. I demanded some x-rays before he left but they refused, saying no clinical evidence to warrant it.
He has been in a nursing home for 2 weeks, about a half hour drive away, started in a locked dementia ward that distressed him greatly because he needs calm and quiet. yesterday they transferred him to an unlocked high care section, fewer staff but people have no real behaviour issues.
He seems to be asleep most of the day, refusing food, although when I ask he sometimes says yes, then opens his mouth and gets very upset when it's in his mouth, everything tastes awful, even a sip of tea. he is still asking for water, which is good. He seems very depressed, is on Citalopram to treat depression from dementia, not a chemical problem. I feel he is pining for home, and his family. I am spending every day there to try and support him and give him as much love and comfort as I can. My mum needs to rest and doesn't drive, I stay long hours and can't take her with me since she needs to be home earlier. My sister is much younger, works part time, lives further away, and has a 2 year old. My children are adults.
Basically, I am the glue holding all this together, seeing the most of Dad's needs, and possibly the most emotionally attached. Mum seems to have decided she just can't have Dad back home, she has given up, told us she has mourned for him and lost him already, even though he knows we are all his "lovey mums". He wakes every now and then and calls, " Mummy, Mummy, Mummy, where are you?" All the care staff have very heavy accents, since they seem to be the only people willing to work in this industry for the money it pays. They are nurses and RN's but it still means Dad can't understand them and won't believe they are us, which he did in hospital, he called them all Mum, meaning my mum.
To my point, sorry, I take too long. The nursing home said he is shutting down, we can't get him to eat, he seems to be sleeping all day and in pain some of the time, but can't identify it to us. We have been asked if we want to PEG feed but their opinion is he would not cope with the surgery, or any other tests or procedures to find a source of pain or indeed, to treat it. They said we should consider palliative care, providing pain relief in the form of a morphine-based med, only use necessary meds, no tests or treatments, and keep him comfortable.
I suppose we feel a PEG feed is too invasive and palliative care would be the kindest choice. I am struggling with everything, he isn't incontinent, knows he needs to go but can't call for help or go himself. If I'm not there he has just pulled down the front of his pull-ups and done it in his lap, meaning a whole change of clothes, which means lifter, stress, it is all overwhelming me. A staff member can't be watching him every second and if they try to toilet him at other times he says he doesn't need to go.
I am wondering whether any of you have experience of any of this and an opinion or advice? My mum and sister tell me I can't control everything and we need to give up on Dad, in a way. I am constantly plagued by images of him wanting us, being with strange people, he was only moved to the quiet section yesterday so he needs to get used to new people again, and I know that will happen. I'm also concerned that the other residents in that section seem to be fairly ok, walking around, sitting at the tables to eat, and I wonder how they are high care, I don't know if there are any with dementia in that section either. When they said they would move him, and said the assessment from hospital seemed to be for a different person from the man they see, and he should not be in a locked unit, I said what about his anger issues, and they said lots of high care residents have those issues, with or without dementia.
I am floundering, as usual, feeling overwhelmed and exhausted, but can't just switch it off. So far, I have been there almost every day, except for a couple of times my sister took my mum so I could stay home. I know visiting and NH isn't giving up but it feels like abandonment to me. Sorry, this seems to have chopped all over the place, giving bits and pieces and not really making myself clear, in light of the Thread Title.
Stephanie, xxx
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Didn't try that again
