Respite care

[lindsey.deane]

Hi all

I'm still new to all this and wanted to air my feelings on respite care.

My dad is only 53 and has Pick's Disease. The change in him over the last few years is astonishing. It breaks my heart when I look at him but I know it's something I've got to deal with. My mum, who is only 51 is his full time carer. They've been married for 31 years.

In November, my dad is due to go into respite for a week. I know this is the best thing for my dad and will give my mother a well deserved break. It's going to tear her apart when we take him in even though I know it's only for a week.

How can we best prepare for this and how can I stay strong for my mum. There will come a time when he has to go in for good and I suppose this is good practice for when the time comes.

 

[Lizzie K]

Hi Lindsey, my husband and I are carers for father in law and we have just managed to get him to agree to go into respite care for week so that we can have our first holiday in four years.

We too were worried about how he would cope so our social services department helped us organise a respite centre with a day care centre attached to it. Dad went for his first day visit last sunday and thankfully had a really good time. He is going for the next two sundays and then he will stay there for a week at the end of October. Is there any chance you could do something like this, even if he can just try it out for a few hours? It will then hopefully not be too much of a shock to the system for him when he stays over.

Hope all goes well for you. Lizzie K

 

[alfjess]

Hi Lindsey

Lizzie's suggestion is a good one.

MIL, went to respite in the place where she had gone to daycare and she was quite happy.

If the above is not possible, we told Mum and Dad, we had booked a holiday. Fotunately the respite care home looked like an hotel.

Alfjess

 

[lindsey.deane]

Hi there

Thanks for your responses - much appreciated. My dad attends day car two days a week and has been going for quite some time. He thoroughly enjoys it and he gets on with the people who come to pick him up.

We don't have any conversations with my dad, it's just one word answers - usually just yes.

I'm just a bit apprehensive as to how he will behave when he's there - I'm worried he will get confused and anxious and get aggitated.

I'm probably just over thinking about how he will be. I'm sure he will be fine.

 

[Margarita]

I'm worried he will get confused and anxious and get aggitated.

That can happen , so in a way its good to think like that so you can prepare yourself be strong for your mother , as they a saying think of the worse hope for the best .

My mother is older 74 her only real issue was that I was not going to pick her up after the week also that the people where so old , had to do a lot of reassuring

I stayed with my mother for an hour on her first respite as she got very anxious, then the staff told me its best that I leave if they is any worries with her they ring me . I would ring to see how mum getting on or even talk to her, but found that made it worse because she would get very anxious about when I picking her up making me feel very guilty and I use to spend the whole respite thinking worrying about her . so I don't ring her any more or mum me , mum getting use to it now as its a year half that she been going to respite , knows I always pick her up

all you can really do is give it a try , at lest you can say you gave it a try if it does not work for your father in respite , then who really knows it may work for him

Good luck let us know how you get on lindsey

 

[Taffy]

Hello, I have personally had no experience with respite through my own ignorance but sure wished I had of. I joined a support group earlier this year and know many carers that use respite they see it as recharging their battery. As for the settling in part the gist of it seems to be everyone is different some settle very well and enjoy their stay while others settle much better second time round. The benefits for the carer all seem positive ones. Glad you use the day care centre. I hope all goes well with the respite for all concerned. Regards Taffy.

 

[currywurst]

Respite is good!

Hi Lindsay

I recently had to go through with my mum going into respite for the first time. I found it really difficult to make the decision for mum to go in as I too was worried about how both of us would cope, but do you know what it wasn't as bad as I had feared. I coped and so did mum. I had been looking after mum full time for two and a half years and was desperate for the break so in the end the feelings I had when I left her at the care home were of elation at my having a break but fear of how mum would get on.

I suppose I was lucky in a way because mum had gone past the stages of being aggressive and wandering so I didn't have that to worry about but she did suffer from extreme agitation which made her scratch until she bled and I thought she would scratch herself to pieces because she wouldn't be having one to one care, but actually that wasn't too bad either. I think ultimately it was the fear of what might happen rather than the fear of the respite which was the most difficult, and also that my mum couldn't hold a conversation so couldn't communicate her needs.

What I spent some time doing before mum went in was to make up a folder all about mum. I did differents topics such as things mum liked to eat and how she ate them, things mum was able to do and also couldn't do. I did a story about my mum before she had Alzheimer's and since Alzheiner's, I talked about her family and how mum had met my dad. Also a contact's information sheet and I also made up a photo album with lots of pictures from the holidays we have had since I cared for mum, the family etc. The care home was absolutely delighted with it and when I picked her up they said how helpful it had been to refer to and I also felt better knowing that mum wasn't going in as just another respite patient, but as my wonderful mum.

I think respite is a positive experience and I wished I hadn't left it so long, you just have to accept that your dad isn't going to get the same level of care as he gets on a one to one basis at home with your mum but the staff were marvellous and went out of their way to help. I stayed with mum for an hour after I took her in and unpacked her stuff then left. I was told to phone whenever I wanted, Mum is going back in in December so I am looking forward to the German christmas markets!

Sorry for the long post but I hope it has helped. God luck to you, your mum and your dad.

 

[lindsey.deane]

Hi guys

Thank you so much for all your replies and your supporting comments. From the last reply, I have taken into account making a folder with photos of us as a family and putting something together for when my dad goes in.

It's nearly a month until he goes in and the anxiety is slowly creeping up on me but I'm sure it won't be half as bad as I think it will. I've had to get used to the change in my life-loving dad, so I'm sure I can get used to this. The first time will be the hardest but is for the best for all concerned.

Thanks again for your support

 

[rhallacroz]

Respite

Hi Lyndsey
I know how you feel . Mum and I are just considering putting dad in respite and I am worried to death that dad will fret even though we aren;t going away we will stay at home but just have a break from the constant stress of wondering what dad is up to . I have a young family and balance looking after mum and dad who are both 83 it is so hard work. I dread it going wrong in respite and him coming back worse although he is used to day care now. Although sometimes he says he doesn;t like it the staff are wonderful with him. Is your dad going into emi care or ordinary respite. I understand a little about Picks disease my friends dad had it and I know they had to go down the respite road which helped their mum cope that little bit longer which is just really what we are all trying to do. In the end he did end up in care but they managed to find a really good care home that he was used to going to. All we can do is do the best and sometimes that means making hard decisions like respite and care. God I hate this journey I know how you feel. I am sorry that your dad is so young Lyndsey life is so unfair. I do think this forum helps us all.
Keep in touch
Angela
PS Just had to go to dad he very confused when is this al going to end.

 

[lindsey.deane]

Hi there

I had a nice chat with my mum last night. We don't mention in front of dad about him going in for respite - we don't want to unsettle him at all or think that anything is wrong.

I took on board the suggestions of putting a photo album together for him to take in for him to look through and let the staff know what he likes and what he doesn't like. I think it will all help and we'll know after he's been in once if he'll be ok to go in again.

I know how you feel when you ask when will this all end?? We have no communication with my dad - he ignores our questions and just stares blankly at us sometimes which is hard to take. He knows who we are - at least I assume he does as he doesn't call us by our names or anything.

We're getting it from all angles at the moment - my gran (my dad's mother) has early onset alzheimers aswell.

God help me!!!