What to do for the best......

[Heylowe]

Apologies if this turns into a long post!!
My dad is deteriorating - no longer walks, toilets or feeds himself. He talks but only in a good day can we understand him. We now have carers in 3 times a day to help mum get him to toilet etc. The carers insisted a hoist was fitted in the bedroom but they messed my dad around so much & left him dangling while talking about him,
my mum has promised him she will never use it again. It was so upsetting - he was petrified. I know people think they're doing what's best but my mum knows my dad the best. Some people don't seem to realise how scared & frightened he is, I guess they see dementia so often to them it's just another person.
My mum has been advised by the nurse tending to dads feet that he would be better off in a home. Maybe he would but maybe it would add to his sadness. He knows he can't do what he used to & it's heartbreaking. He sleeps most of the time but still eats so I assume we have a way to go yet.
My mum looked round a home today but literally cannot leave him there she said. She can't put him there & walk away. I know she'd visit etc.
I just wondered if it is possible to keep them at home until the end. Yes it'll be very hard but surely not every dementia patient ends up in a home. I'm just feeling so sad about it all at the moment. My dad has turned into a sad, scared tiny man. It's heartbreaking - but we all know that. Some days I'm harder & know we've just got to help as much as we can but other days it's just too sad!!! Have or do others care for their loved ones at home & intend to until the end? I know it's very personal but just needed to write today!!! Thank you for your lovely answers as I know there will be some

 

[karaokePete]

Hello @Heylowe, what a sad post, I feel for you and your parents.
I’m not in the same position yet but I certainly hope to look after my wife at home until either I can’t or there are safety issues involved. Sadly there so often comes a time when we do have to surrender our loved ones to the care of others because it reaches a stage where it’s in their best interests. I’m sure others will be along with more meaningful replies but wish you all the strength required at this tough time.

 

[Amy in the US]

Hi there, @Heylowe. I have not been in your position but have seen posts here from others on TP who are caring for their PWD at home in the later stages, or who cared at home for someone until the end. I am sure in time you will get some responses from those with personal experience.

It's not a foregone conclusion to put someone in care. Sometimes, for whatever reason, it's not possible to care for someone at home, or situations change, and then a care home or nursing home may come into play.

Do make sure that you and your mum have enough support to be able to care for your dad in a way that is safe for everyone, the right equipment and care package, that all his needs are well managed, and so on, but in a way that allows your mum to sleep and eat and care for herself as well as your dad. If you don't look after yourself, you can't care for anyone else, after all.

Best wishes.

 

[Heylowe]

Hello @Heylowe, what a sad post, I feel for you and your parents.
I’m not in the same position yet but I certainly hope to look after my wife at home until either I can’t or there are safety issues involved. Sadly there so often comes a time when we do have to surrender our loved ones to the care of others because it reaches a stage where it’s in their best interests. I’m sure others will be along with more meaningful replies but wish you all the strength required at this tough time.

Thank you for your reply. I didn't mean it to be a sad post - but sometimes it's best to get it out! It's a very cruel disease.

 

[Heylowe]

Hi there, @Heylowe. I have not been in your position but have seen posts here from others on TP who are caring for their PWD at home in the later stages, or who cared at home for someone until the end. I am sure in time you will get some responses from those with personal experience.

It's not a foregone conclusion to put someone in care. Sometimes, for whatever reason, it's not possible to care for someone at home, or situations change, and then a care home or nursing home may come into play.

Do make sure that you and your mum have enough support to be able to care for your dad in a way that is safe for everyone, the right equipment and care package, that all his needs are well managed, and so on, but in a way that allows your mum to sleep and eat and care for herself as well as your dad. If you don't look after yourself, you can't care for anyone else, after all.

Best wishes.

Thank you for your reply. Very true!!

 

[tryingmybest]

Hello Heylowe. My Mum has been living with me for 3 years now and she cannot do anything for herself at all and also eats and drinks very little. I am her sole carer. She also has lost the ability to speak and I find that the hardest part, not being able to have the conversations that we used to. She still has a little mobility and I am able to still get out and about with her using a wheelchair but dread the day she loses mobility, as I am unsure how I would manage on my own. I went through 3 very difficult court hearings with the Court of Protection to keep her here with me as I knew she would rather be here with me than anywhere else so I am determined to continue to the end with her if I can, as difficult as it can be at times.

 

[Heylowe]

Hello Heylowe. My Mum has been living with me for 3 years now and she cannot do anything for herself at all and also eats and drinks very little. I am her sole carer. She also has lost the ability to speak and I find that the hardest part, not being able to have the conversations that we used to. She still has a little mobility and I am able to still get out and about with her using a wheelchair but dread the day she loses mobility, as I am unsure how I would manage on my own. I went through 3 very difficult court hearings with the Court of Protection to keep her here with me as I knew she would rather be here with me than anywhere else so I am determined to continue to the end with her if I can, as difficult as it can be at times.

Wow what a strong lady you are! You're doing so well & being so strong! My mum has finally made a decision to (despite what anyone else says) keep my dad at home for the very longest possible - hopefully til the end. Like you, we know this is where he is happiest. Thank you for your post - keep
Strong & be proud of what you are doing!! You're definitely doing your mum proud x

 

[Leedsloiner]

Be very proud of the care and support you and your mum are giving your dad . My sister and I cared for our mum at home until the day before she died . Mum died 9 weeks ago in hospital against her and our wishes long story but palliative care was blocked by doctor. We are at the start of complaints procedure. I loved the fact we cared for mum but it was very hard sometimes. We had no help but that was our choice. All I would say is just love them while you have them cherish every moment you have together .I know my mum was not anxious when she knew we were with her . You have to stay strong to cope with what this terrible disease does to your loved one. Caring at home can be done .

 

[Heylowe]

Be very proud of the care and support you and your mum are giving your dad . My sister and I cared for our mum at home until the day before she died . Mum died 9 weeks ago in hospital against her and our wishes long story but palliative care was blocked by doctor. We are at the start of complaints procedure. I loved the fact we cared for mum but it was very hard sometimes. We had no help but that was our choice. All I would say is just love them while you have them cherish every moment you have together .I know my mum was not anxious when she knew we were with her . You have to stay strong to cope with what this terrible disease does to your loved one. Caring at home can be done .

How lovely to hear your experience! I'm so glad you did things how you wanted to do them (until the end unfortunately). You & your sister must be very strong but your post is just what I wanted to hear!! It is possible despite what al the professionals say!! We know dad wants to be at home & is only relaxed with us. Thank you for replying - I hope you have some success & are coping with your grief, such a sad, horrendous disease.