We want Dad to come home

[Dilster]

Hi Everyone

My Father was diagnosed with dementia about 3 years ago and at the time I was living overseas. My mother looked after him, with the help of a carer who visited everyday. His condition got worse and about 6 weeks ago she decided that she couldn't cope anymore and she asked for him to be taken in to hospital. My mother was not well herself and I decided to rerun to look after her, with my wife and son. I saw my Dad yesterday for the first time in 18 months and I was shocked. He had lost so much weight and was shuffling around, he could hardly speak and we all burst into tears. I felt as if someone had reached down my throat and crushed my heart. The hospital seemed nice and now they want us to decide where he will go for permanent care.

Here's my question, we want him to come back home. I feel he doesn't have a lot of time left and would hate for him to die in care. We are staying with my mum and she has a large detached house. My wife has worked in care homes and dementia wards for 10 years, although she is a housekeeper and not a carer, she has several Dementia care related qualifications and is more than happy to care for him. I work from home and will also do my bit We know this is going to be incredibly demanding but we believe we are up to the challenge, my wife has cleaned patients for years and has no problem helping with Dad

We love him so much and really want this to happen. Do you think the hospital will be okay with these wishes? Is there anything they can do to stop this happening? My mum has not signed any release forms and he is not a 'ward of the state'.
Any advice and opinions are welcome - Thanks in advance.

 

[1954]

Welcome to TP

I think they will willingly let you take him home as it is not a burden on the NHS. But it can be an enormous strain physically and emotionally on the carer's

Others will come to this thread soon with other ideas

I think you are all marvellous wanting to do this for your Dad-hope it all turns out well for you

Keep posting as you will get a lot of support here

1954 x

 

[Moonflower]

The only point I would add is that if your mother has been caring for your father alone for a long time, when she got to the point of asking him to be taken into hospital she may have really come to the end of her tether. Is she happy for him to come home? Will you move in with her permanently to help?
I think the authorities will willingly let you take him home - but whilst he is in hospital you have some "power" to demand that support is put in place - once you have him home you may find it much harder to access help. I mean both support like carers coming in, and also devices like hoists if needed.
I suggest you make sure you have a proper assessment and know exactly what you will be taking on before you make a decision.

 

[Polly1945]

Hi Dilster

Welcome to Talking Point

It is a wonderful thing that you and your wife are prepared to do. It will be hard work and will need a great deal of commitment but definitely worth a good try.

When my Dad died I brought my 92 year old Mum to live here with us (we had built a separate place next to our house for her and Dad). With the help of my husband and son we looked after my Mum for almost 5 years and for the most part of that she was quite content and the Alzheimers kept quite steady. Unfortunately, in Dec last year we felt that the residential care home (where she was going three days a week for day care) would be a safer and better place for her as she was getting very lonely and confused.

I work from home too, and this made it easier to take care of Mum.

It's definitely worth trying, at least you can say, we tried, even if you eventually need for your dear Dad to have 24/7 professional care sometime in the future.

I can't see why there would be any objections. Make sure you get all the help available to you as a family. Benefits etc. it all helps. Perhaps your Dad would enjoy a day out at the local day care place, that would give you all a little breathing space and your Dad would probably enjoy the company.

Let us know how you get on.

Best wishes

Pauline

 

[Dilster]

Thanks everyone
Yes we will live here permanently from now on.
I agree that additional care will be welcome and we will ask for this.
I also understand that it is my mother's decision at the end of the day. She had enough before because of her own health issues. Since we have returned she has perked up a lot and I feel she misses him so much. we still have a lot of talking and thinking to do and I will not rush my mother into any hasty decisions.
I will update you all as to what happens - some great advice here - thanks again

 

[rajahh]

you mention that you have a child, you have to think very carefully about the impact on him/her.

It is a wonderful idea, but the reality will be much harder than the idealism.

Jeannette

 

[Dilster]

you mention that you have a child, you have to think very carefully about the impact on him/her.

It is a wonderful idea, but the reality will be much harder than the idealism.

Jeannette

Absolutely, fortunately my son is very well adjusted and we had a very sick relative stay with us for 6 months in Thailand. He is remarkably helpful and really loves my father. But we still have a lot of thinking to do before making that call.

 

[JackyS]

Hi Dilster - hats off to you and your family. I so wish I could have done the same thing for my lovely Mum.

Assuming your Mum is willing to give it a go, my advice is just do it. You clearly want to and you will always regret it if you don't try. At worst, you may all decide in the future that your father needs more help than you can offer - but at best, you will have some lovely times before then and create some more memories for you all (especially your son).

But, as others have said - make sure you get some additional help, too. It may not seem like it right now, but you will need it.

Good luck x

 

[Onlyme]

You also need to think about how many of you it will take to look after him. While it may seem ok at the moment what happens when he is not sleeping and walks around all night? Your wife will need sleep and you will have to try to work, sort out your Mum, do the school run, shopping and work at the same time. He may soon need to be hoisted and that is usually a two man job. He may need turning in bed every two hours. Getting carers that you are happy with is another thing. You may not get respite so can't go on holiday, spend time at your child's school events. I have been there and it really tough not being able to go and support them as you can't get help.

I would think the worst case and add 20%.

Your Mum may have come to carers breakdown and having him at home is very different than for her to go and visit. Be careful that you don't bring your Dad home to the detriment of your mothers mental health.

 

[doodle1]

I read your post with sadness and slight amazement that you had not seen your father for 18 months and then come home and decide you know what's right for him- no mention of your mum's feelings or wishes.Really sorry to be brutal and I do understand you want to care for your dad but what has your mum been doing whilst you have been away??
Of course you want to support your dad but as others have said what about your mum?This disease is truly horrible and although your wife has worked in care homes , at the end of the day she has been able to go home to a non dementia home.Having them with you 24/7 is a different ballgame and will impact on your child hugely however well adjusted they are.
wishing you well whatever your decision. x

 

[KentJude]

It is possible as long as your father isn't a danger to himself or others. I've cared for my mother on my own - with the help of carers as needed - for more than four years.

As others have said, make sure you get a care agency and occupational therapy team on board before your father leaves hospital.

There are many advantages of caring at home including control of your dad's wellbeing, diet and comfort. For me this control translated into less stress and guilt and saved me lots of anguish. Having a few of you working together means you can live your own lives to some extent. The worse things for me apart from losing my salary are isolation, taking the whole responsibility and lack of social life, but as I say your family will be able to share the burden

 

[Witzend]

I would suggest three things to think about very hard, if this is something you haven't lived with before:

1) Constantly broken nights - wandering, calling out, banging doors - nobody ever getting a proper night's sleep. And it's usually no earthly use explaining or asking, or getting a different special clock - none of it makes a blind bit of difference.

2) Complete lack of peace during evenings and weekends, not to mention much of the day for whoever's at home. For example, endless pacing, endless asking of the same question, nobody ever (or hardly ever) able to (e.g.) work or study or watch any TV programme in peace.

3) Never being able to go out as a family, not even for an hour, because the person cannot safely be left even for a very short time.

These are all things that many of us here have experienced. Obviously this is not an exhaustive list and the things I've mentioned may not apply to every dementia sufferer. However they are all extremely common. It's very hard for anyone who hasn't done it to understand just how exhausting living with dementia can be.

 

[FifiMo]

What you could do to help with making the decision is arrange for an OT to take your dad home for an assessment. You can walk through the house with the OT and discuss what might be needed to make this work. The OT can arrange for things like a chair for the bath, grab rails around the house, checking if he is safe with things like stairs, where he would sleep, toileting..is he continent, maybe a commode would help if there are problems in this area. They should also be able to arrange for things such as a wheelchair etc too.

At least after the visit you should have a better feeling of what might be involved. Only thing you will have to consider is whether taking your dad home for a couple of hours then back to the hospital again might be too distressing for him.

If you decide that home is the place to be, then do not let them discharge your dad until you are satisfied that all the equipment/support is in place. As long as he is occupying a bed, you have the upper hand, so stand your ground.

Hope this helps,

Fiona

 

[Dilster]

Thanks for the new messages.
I'm sorry that I didn't say much about my mother's feelings.
This was her choice and she seems overjoyed that we are happy to help with dad.
The house is a bungalow and is very secure with electric locks on the outside doors.
I understand it will be very difficult and have lived with sick people before, albeit overseas. This is not about me marching back into my mothers life and being some kind of hero -
We have a meeting with the hospital on Monday and have much to discuss.
My father is very weak and has lost so much weight, I fear that he may not have the energy to stomp around in the night, but we are prepared for all of the types of behaviour. My mother is the one who has the last word and I have given her a lot of space to ensure that she is 100 % about this.
FifiMo - your suggestion is exactly on the ball - thanks so much.
The hospital is nearly 70 miles away, we live in the Highlands and that is the reason my mother has not been able to see him since now, she is 76 and he is 80.
Thanks again

 

[Dilster]

I read your post with sadness and slight amazement that you had not seen your father for 18 months and then come home and decide you know what's right for him- no mention of your mum's feelings or wishes.Really sorry to be brutal and I do understand you want to care for your dad but what has your mum been doing whilst you have been away??
Of course you want to support your dad but as others have said what about your mum?This disease is truly horrible and although your wife has worked in care homes , at the end of the day she has been able to go home to a non dementia home.Having them with you 24/7 is a different ballgame and will impact on your child hugely however well adjusted they are.
wishing you well whatever your decision. x

I didn't realise that my post came across that way, but having read it a second time, I guess it does - sorry
My mother asked us to come back, and I left a dream life/job/business, my son had a wonderful school and so many friends. My wife left her own mother who is unwell. But here we are and the first thing that my mother said was ' I want him back'
She needed some respite herself and we have made sure that she has not lifted a finger since we returned.
I appreciate your comments and it is going to be very hard, but isn't life like that?

 

[Margaret938]

Hi Everyone

My Father was diagnosed with dementia about 3 years ago and at the time I was living overseas. My mother looked after him, with the help of a carer who visited everyday. His condition got worse and about 6 weeks ago she decided that she couldn't cope anymore and she asked for him to be taken in to hospital. My mother was not well herself and I decided to rerun to look after her, with my wife and son. I saw my Dad yesterday for the first time in 18 months and I was shocked. He had lost so much weight and was shuffling around, he could hardly speak and we all burst into tears. I felt as if someone had reached down my throat and crushed my heart. The hospital seemed nice and now they want us to decide where he will go for permanent care.

Here's my question, we want him to come back home. I feel he doesn't have a lot of time left and would hate for him to die in care. We are staying with my mum and she has a large detached house. My wife has worked in care homes and dementia wards for 10 years, although she is a housekeeper and not a carer, she has several Dementia care related qualifications and is more than happy to care for him. I work from home and will also do my bit We know this is going to be incredibly demanding but we believe we are up to the challenge, my wife has cleaned patients for years and has no problem helping with Dad

We love him so much and really want this to happen. Do you think the hospital will be okay with these wishes? Is there anything they can do to stop this happening? My mum has not signed any release forms and he is not a 'ward of the state'.
Any advice and opinions are welcome - Thanks in advance.

I say, Bring your Dad home, it sounds as if you are more than able to cope, if I am not mistaken, the decision is yours and your Mum's entirely. If I could I would bring my husband home tomorrow. He was sectioned at the beginning of the year for five weeks, and I fought all the time to get him home and I did. Unfortunately, he began wandering away again and being aggressive at times, and I could not really cope, I was just tired out. I did not like putting him into a CH but he is very relaxed now and I visit him every day and bring him home some days for an afternoon.
So my advice is hold on to your Dad as long as you can at home.
Margaret

 

[end of my rope]

Just some thoughts

You sound completely up for the task - I just wanted to ask about your child ? not sure how old he is. We had my mother live with me and while I know that my daughter is a loving, kind and gentle child who would care for others before herself I didn't realise what we had signed up for:
no more sleepovers for my daughter
no more lie-ins (incredibly important for teenagers)
regular arguments and false accusations from my mother against my daughter
virtually impossible to attend school events as no cover available
complete takeover of the household by my mother's illness and needs
regular criticism of my capacity as a parent.

Your son is currently in a good school with lots of friendships? How is he going to manage the transition - which clubs is he going to join and how are you going to ferry him between different activities and events? Can you reciprocate the various invitations which he will be given? It sounds horrible but some people who do not have a relative living with alzheimers/vascular dementia are often very scared of the disease and steer clear of those and their families living with it.

I realise you are moving in with your parents so the dynamics would be very different - after all it's their house not yours but this does need to be considered carefully. It's a big ask for you, your wife and your child.

Good luck with your decision and best love to your family both the older and younger members of it

eomr

 

[Dilster]

More developments

Hi all

Since seeing my father on ..what day was it...hmmm...Tueday I believe...
Anyway, my mother has been in a weird mood.
Since we returned from overseas, I noticed she has a weird habit. Possibly stress related, she humms and moans to herself for ages. At first I said nothing, and eventually I asked her about this. She first denied it and then said it was because of her despair. Has anyone experienced this with grieving relatives?

Okay, I had the feeling that she was having second thoughts about dad coming home. Today she called the hospital again and spoke to a nurse/doctor ( not sure ) and we found out that since we left him, dad has been ill. He has C.Diff and is in an isolation ward
When my mum mentioned him coming home, she actually said that I wanted him home, the nurse/doctor said 'no way'.

We are going to see dad tomorrow and my son and wife are coming as well.
We are obviously worried about him and there is a lot of stress in the house now.
Mum is making those noises again and I have the feeling that she has changed her mind.
If that is the case, I understand 100% as she has been through so much.

I am very sad today

 

[Onlyme]

Are you very sure your Mum has not already had a breakdown? That humming does sound as if she is very stressed and its is a coping system. For the Dr to say straight out No Way then something big must have happened.

Obviously you want your Dad home but as has been said this could be at the expense of your Mother and you will end up having to look after two of them.

 

[FifiMo]

Hiya,

I hope you have a nice visit with your dad today. It is a long round trip for you all. Is he in Raigmore? I was brought up in that area.

I agree that the humming is stress and avoidance related. You can't hum or sing or moan and think thought at the same time! Now that your dad has CDiff, maybe adopt the 'lets wait and decide later' approach, particularly with your mum. I suspect they sai no way can he come home inferring that he can't do so due to the CDiff and not in the context of no he can't ever come home.

As a fallback, you might want to start exploring what care home options there might be in the area. If your mum then decides this is the route she wants to go, then you will have one in mind that would be suitable.

Take care,

Fiona