thecurs1

[thecurs1]

Dad in care and I've had to leave the country.

Hi, I’m new to the forum and have been reading all your comments. Everyone is very kind. I could do with some advice. My father has Alzheimer’s and went into a care home in France there a month ago. For the last 6 months, until he went in, I was there helping my mum look after him. (He’s English, she’s French). We dressed showered and sometimes helped him eat. We got him to the loo on time, chatted to him, played music and went for little walks. He slept for much of the day but had a great appetite and even if he was aggressive sometimes, mostly he was ok. Now he’s been in the home for a month and he’s gone so downhill. The staff are very kind and competent but the place is very short staffed. My dad has fallen several times trying to get out of bed and leave. He had to have stitches and since then, despite having sorted out the pain/bruising etc, he doesn’t walk and has gone into despair. He refuses to eat then forgets he refused to eat. He refuses his meds. and begs to be let alone to die. The doctors are aware of this and we’re trying to sort this out, though it seems to take so long.
The problem is that I have come home and I miss him so much. I can’t help feeling that I should have waited until his current state has stabilized. I can’t seem to want to do anything except be on the phone or be there. I feel bereaved. My partner has been brilliant but now that I’m back, he wants me to ‘be back’ and I don’t know how to be when I know my dad is in this state. Can anyone advise me as to how I can cope with some of this? I know it’s a lot. Thank you.

 

[Grannie G]

Hello thecurs1

I`m really sorry you are so upset about leaving your father behind. Long distance caring is an additional worry to that already in place.

It is sad your father seems to have gone downhill since he entered residential care. When this happened to my husband, someone asked me to consider if his condition had deteriorated because he was in residential care, or had residential care been decided upon because his condition had deteriorated.

Happily my husband settled and his physical health improved. I wish the same for your father.

 

[Haylett]

Dear thecurs1,

I can only sympathise, and echo what Sylvia has already written. Our two mothers are cared for at home - but I do know what long distance caring is like, and it takes a heavy toll. I'm so sorry that you have seen a decline in your father and hope very much that this is the sort of transition/adjustment period that seems to happen quite frequently when people with dementia transfer to residential care. Your first impressions were good - that the people caring for your father are kind - and perhaps this is a kinder move to make while your father can adjust more easily, then delay and cause him much greater adjustment problems and greater distress to you and your family.

Very hard too both on your partner and on you. Caring for dementia is so very particular, it's so relentless and all consuming over a much longer period (to speak brutally) than other illnesses, with needs constantly changing like a shape-shifter, that emotional and mental escape is monumentally difficult. I've been lucky enough to have a small but close circle of really good friends who never grumble when I have to cancel plans at the last minute. I hope you have the same because this is a very stressful time for you too. Many of us on here, will understand completely how you feel torn, and how hard it is to switch off.

I hope your father settles happily and soon into his new life - the sooner he is comfortable and feels secure in his new surroundings, the easier it will be for your to find the balance between your own life, and the part that is helping your Mum care for your dad. And I'm sure that's what your dad would want.

 

[Big Effort]

Dear Thecurs1,

Welcome to the forum. We have two things in common already. A parent with dementia. And both of them in France. My advantage over you right now is I also live in France, and Mum is at home.

This is a very painful spot to be in, torn by worry for your father, torn by concern as to whether the care home is hastening his descent, and with a partner who hopes now you are back in UK, that at least your life will return to normal.

I think you have made a wise move to join the forum. Here you will find many others in similar choppy waters as you. You will be able to read the posts over an extended time, and you will find there is no perfect solution. Dementia is very difficult, for the sufferer and for the carers. I think you will soon read posts by others with parents who are not happy in care homes, having ups and downs, wanting to go home and so on and so on. I know it seems as if your situation is so dire as to be unique, but I have found there is great comfort in reading how others are coping and how they feel about the choices they face.

As for your partner. Hmmmm. My husband is a saint, totally hands on with Mum, and he supports me no end. I think dementia is one continuous berevement, a slow, slow one, with each change, each slip backwards opening up the sadness. At least this is my experience. Perhaps it would be wise to let your partner know that even though your Dad is being cared for, and alive, that you are very much emotionally engaged with the whole process and not to expect 'out of sight, out of mind'.

In time, we may have to put Mum into a French home. So I would really like to hear of your experiences with your Dad, language barriers, quality of care etc etc.

Keep posting. It sounds odd, but this does help one to process all the muddle of feelings, sadness and choices made and still to make. I am way better since I joined in June.

I wish you gentler times and may your father settle and feel much more content, BE

 

[Pheath]

Hi, I relate to what you write as your set up (pre-care home) was very similar to mine ie. helping my mum out full-time looking after dad in his own home. It must be incredibly hard not being able to visit your dad whenever you like and can totally understand why you’re so worried. When we move our loved ones to a care home, it’s of paramount importance to us that they settle well and we feel they’re well looked after. To see your dad so depressed must be heart-breaking and like you I’d find it impossible to relax if I thought my dad was unhappy. I’m slightly concerned that you say the home is terribly short-staffed as the staff:resident ratio is very important especially if the home specialises in dementia or has a no. of people with high needs. I do hope that measures are in place at night if he’s already fallen a few times getting out of bed. The falls combined with being in a new environment might have set him back and caused depression to set in. I know it would be a drastic thing to do but would it be an option to move him to a different care home with a higher no. of staff? We moved my dad after about 3 months from his 1st home, although for different reasons, and have never had any regrets. Otherwise I sincerely hope he settles more as time goes on, 1 month is still relatively early days and perhaps with the right meds and in the course of time things will improve for him. Take care,

 

[thecurs1]

what about med for extreme panic and distress?

I wanted to thank you for your kind comments, it's amazing how much comfort can be got from reading your answers and from knowing that my dad and family are going through what other people go through. Although it doesn't comfort to my dad who's living it, it gives me some comfort knowing we're doing something wrong. Most people must feel guilt about not being able to stop the fear. I think of that film 'terms of endearment' when Shirley McLaine is in the hospital and her daughter is in pain. She keeps asking for the doctors to give her something and then when they keep delaying, she just starts screaming for them to help her daughter. (Being a bit tough: rolleyes the only part of the film I cried at every time was at that bit. I feel like that a lot at the moment.
My dad is on an Escitalopram 20mg and is also talking Lysanxia (Prazepam) which is a benzodiazepine. In France it comes in drop form. He's now on a high dose, up to 20 drops a day, but the anxiety persists. I've been wondering if this med. is quick to act, but had a short effect. I know it's addictive and also that it works less as time goes on.
Can anyone suggest other meds that I can look into?

 

[thecurs1]

Care in france.

Hi Big Effort. I'd be happy to let you know about care in France. Do get in touch.

Dear Thecurs1,

Welcome to the forum. We have two things in common already. A parent with dementia. And both of them in France. My advantage over you right now is I also live in France, and Mum is at home.

This is a very painful spot to be in, torn by worry for your father, torn by concern as to whether the care home is hastening his descent, and with a partner who hopes now you are back in UK, that at least your life will return to normal.

I think you have made a wise move to join the forum. Here you will find many others in similar choppy waters as you. You will be able to read the posts over an extended time, and you will find there is no perfect solution. Dementia is very difficult, for the sufferer and for the carers. I think you will soon read posts by others with parents who are not happy in care homes, having ups and downs, wanting to go home and so on and so on. I know it seems as if your situation is so dire as to be unique, but I have found there is great comfort in reading how others are coping and how they feel about the choices they face.

As for your partner. Hmmmm. My husband is a saint, totally hands on with Mum, and he supports me no end. I think dementia is one continuous berevement, a slow, slow one, with each change, each slip backwards opening up the sadness. At least this is my experience. Perhaps it would be wise to let your partner know that even though your Dad is being cared for, and alive, that you are very much emotionally engaged with the whole process and not to expect 'out of sight, out of mind'.

In time, we may have to put Mum into a French home. So I would really like to hear of your experiences with your Dad, language barriers, quality of care etc etc.

Keep posting. It sounds odd, but this does help one to process all the muddle of feelings, sadness and choices made and still to make. I am way better since I joined in June.

I wish you gentler times and may your father settle and feel much more content, BE