Care Homes

1

This is probably going to get me shot at, but does anyone know of a partner putting a patient into a care home for both their sakes?

I know we read a lot about how relationships can break up after diagnosis, but surely there are - or were - some carers/spouses/partners who felt the best thing for all involved would be full-time care in a specialist home.

Having said that, I doubt that any such person would be reading this now, let alone answer.

2

I was carer for my mother - not my spouse - so not in your situation. BUT some of the emotions will be similar....I was caring for my mother and had slowly had to suggest increasing carers coming in to support her at home. My role had become a million miles away from the role of daughter.

When things progressed it was just too difficult and I was too exhausted to continue and be of consistent help. I will never forget the conversation when I said that I was finding it just too hard and that if she went into a Nursing home then I would have help and things would be less stressfull. After a while she agreed - I know it was something she had dreaded...

It was not an easy step but it made a big difference, I had support and she had consistent 24 hr care and was less stressed that she had to rely on me so much. I became more of a daughter again.

so you are not alone in facing that difficult decision. I had more driving to do to visit but there were lots of things that were better for both of us as a consequence of her moving into a nursing home. Obviously there were lots of issues as she settled in - and I felt that I hadn't been able to manage keeping her in her own home with carers coming in. But I do think that it was the best for both of us - but my job was not 'over' but took on a different direction.

Having the nursing home staff there to deal with so much was such a relief - I felt supported by them, and not so alone in the responsibility of her care.

Hope that helps a bit - I know my situation is very different from yours -

 

3

Im glad you found a competent home.The few I have been to Im sure glad i dont reside there .Aweful drug managmen tis a big problem at nursing homes here in the states.Well for me a home is out of the question even in the future.Everyone of course has their own plans 

4

Thank you so much for your respone to my post Keld, and apologies for the delay in replying.   I have looked daily at the forum but had seen no responses to my post, and had therefore given up hope of receiving one!

Your words offered me some comfort, I must say, although the post subsequent to yours raised my fears/guilt all over again.    I suppose the best I can do is "vet" each care home as much as possible before making the dreaded decision.    I'm so glad that you were able to get your mother happily settled.

Thanks again for taking the time/trouble to reply.

5

Budgies,

Haven't got time now to reply properly but will do asap....but there are very good nursing homes out there and I was given a really good list of things to look for....which I will pass on to you asap.

In the meantime don't look on it as a dreaded decision but a way to solve some of the difficulties and getting daily support for you -

the biggest tip I can give is that the most important factor is that you feel that you can leave the nursing home knowing that they will do a reasonable job.  That supercedes the location location location idea of buying a house. I travelled a distance to enable my Mum to be in where I felt comfortable about leaving her...the closest nursing home - where she went for respite did not turn out to be any help at all, as some of their practices were less than perfect ( and had I had the checklist of what to look for I would never have allowed her to go there!)

More later!

6

Hi Keld

Once again, many thanks for replying - your support is very much appreciated.

We have visited several local care homes, and whilst they seem quite efficient and not too "scary", the residents all seem in far worse condition than my husband is at present.

I'd be very grateful for any tips on what to look for in a home when you get time.

 

7

Not in any particular order - but here are a few pointers, that I found useful.

  • odours.....not of food - unless it is around a meal time, or strongly of bleach or other cleaning materials! - (what is being disguised!!)
  • look at the faces of the staff - are they smiling and interacting positively both with residents and other staff (both with peers and managerial staff)
  • look at the width of corridors and accessibility (sounds a ridiculous thing but where my Mum went for bad respite the corridor to her room was not wide enough for her and a carer to walk along side by side!)
  • can you put any of your own furniture/ what personal possessions are in other residents rooms?
  • expect to see everywhere on  visit and look at noticeboards they may have to see what is going on!
  • Check the size of the toilets/bathrooms....will they be big enough for a resident and carer?
  • ask about how residents call for help if they need it - personal alarm or just the pull-cord in one place..(people are likely to fall anywhere in their room not just by the pull-cord)
  • ask about visiting times - or is it open 'all hours' can you be there for meals or join in with activities?
  • ask about if a GP visits the home weekly - or only in emergencies
  • ask about the daily routine - can you see that working for your husband (and you!)
  • obviously location is important but facilities and staff experience and expertise and may outweigh that!
  • think about how comfortable you will feel walking out of the door - it is not easy but made harder if you do not get the feeling that they will support your husband's needs
  • ask what they know about Parkinson's and check awareness of the variability and individuality of the condition - your husband's symptoms will be different from other residents who may have the condition
  • ask how they manage medication and the specific timings your husband may need that will probably not fit in with the normal 'breakfast/lunch/supper' timings that people without Parkinson's generally have and care homes like to have!! (My Mum's bad respite they tried to alter her meds to fit their timetable...)

Good luck! Hope you find some of them useful.....

Keld

8

Hi Keld,

Many thanks for your list of tips which I have copied and will diligently use in future!

Hope your mother continues to flourish and live well in her home, and best wishes to you both!

Budgies

9

Budgies,

Hope some of the tips are helpful and help you make difficult choices!!

My mother died 2 years ago aged 91, which is why I now I have the time to put what I learned as carer for my Mum to good use.

Remember it is all a compromise - but you need to find the best fit compromise for your situation....and the money becomes Mickey Mouse money!! Nursing home fees are what they are - but you cannot put a price on quality of life and reducing the load on a carer.....and to some small degree reinstating the relationship back to in my case daughter, and for you wife... I recall one occasion as I was helping Mum with her personal care before she moved into the nursing home she said to me...."I have closed my eyes and am pretending you are someone else..."  When she moved I did not tend to her in that way other than when absolutely necessary when I took her to hospital consultations.

Hope all goes as good as it can do for you and your husband,

Keld

10

Thanks for your further post Keld.

Sorry to hear you lost your mother two years ago, but I'm glad she had a long life.

I'm not a "natural" carer in any sense of the word.   At the moment my care duties are minimal, although we both hate that I have to put an overnight pad on him.   If it get worse, as it inevitably will, neither of us like the idea of having carers in and out of our home, which is when we'll have to consider a care home.

The only thing that makes me feel less guilty about it is the words of one of the matrons in a  home we visited, when she said "We won't/can't love him - that's your job.   Ours is to care for him, which we will", adding that I should just think of it as him sleeping elsewhere, as I'd continue to see him daily.

It doesn't make it any easier for me (or him), of course, but I have to face up to my limitations.    Surely it will be better for him to see me as a less stressed and slightly calmer person than someone who hates every minute of what they're having to do, completely stressed out.

It's going to be horrendous when the time comes, I know, but it's the lesser of the evils, I feel.

Thanks again for your support.

 

11

A stressed carer is no use to anyone. My Mum went into respite care when she had been quite unwell for weeks and I had tried to do my best.... but was exhausted....the respite nursing home was dreadful - I had to complain to The Care Quality Commission....then I was signed off stressed by my doctor and in that time I was able to sort out Mum having respite in another Nursing Home that she then eventually went back there as a resident.

The Matron answered all my questions and they passed the scrutiny of the list I gave you!

A matron who runs a tight happy ship and says the kind of thing that you said in your last post sounds good to me!

you could consider carers at home for support to enable life to continue at home. Consider them as providing the elements of care that are tasks beyond the role of 'wife' and to enable you to have a break so you don't get exhausted. Guilt doesn't come into it - it is making the best out of a difficult situation, and so often the needs of the carer get sidestepped - from my experience by the carer themselves!!

Happy to be of help...keep smiing!

12

Budgies,

just found a list of questions on choosing a care home on the Age UK website - worth having a look at !

Keld

13

Hard to keep smiling Keld :-(

The overnight pad was working well for a couple of months, but has now started leaking (although not full),  and I have to wake up to wet pyjamas/sheet, which is so depressing.

Don't know how much more of this I can tolerate.

 

 

14

Hi budgies,

Sorry that you're feeling depressed. You may find it helpful to talk to someone on our Helpline. They'll be more than happy to chat with you and can also give you advice about local support and care options. You can call free on 0808 800 0303 from Monday-Friday 9am-7pm and on Saturday 10am-2pm.

More information on local support is also available at: http://www.parkinsons.org.uk/content/support-you. Just enter your postcode for your nearest group.

Take care,

Edwina

Moderation Team.

15

You are not alone and as Edwina says the PUK Helpline is there....I found it a lifeline.

Being a carer is a hard job, that no-one chooses, and those who have not experienced it cannot know what it is like. But there is support out there, sometimes sharing a problem and describing what is difficult prompts someone else to say,"have you heard about X that might help." What you don't know exists you cannot get to help you!

Are you registered as a carer? Your GP can also refer you for assessments not only for your husband but for you as a carer as well. Practical help as well as financial e.g. Attendance Allowance.

tip for completing forms - paint the picture as it is ....my uncle wrote that my aunt managed on her own the 3 trips to the loo each night - and the claim was not successful. He didn't write that it took her 45 minutes every time and she couldn't get manage the sheets/duvet to get comfortable in bed properly on her own so found it hard to get back to sleep..

Take care,

Keld

 

16

Hello Budgies

I`m sorry you are waking up to wet pyjamas and sheets.  My experience may be relevant to your situation.  We found that the leakage of the pad was because it did not fit snugly enough and so my OH wore stretchy pants on top and the leaks were gone.

I hope this works for you and your husband.

Best wishes

Hattie

17

Thanks Keld and Edwina:   I've been all the relevant routes for support and got all necessary things arranged, but thanks for the suggestions.

Short of a carer coming in before bedtime and fitting the pad, and returning in the morning to take it off and do the washing, I can't see what will help us.    As I said previously, neither of us want a stranger coming into our home, especially as they can't guarantee the time they'll arrive, and to pop in for five minutes would be futile.

Hatknitter:  thank you too for your post.   My husband has always worn stretchy pants on top of his pad.   The pad has been working fine for the past two months, but the last two weeks have been awful for some strange reason.   It's not even that the pad is full or overflowing, just that it's leaking from the side somehow.  

Having a really bad day today, unfortunately, with no end in sight.   It's just awful knowing that things will not improve, but inevitably worsen. 

 

 

18

Dear Budgies

This sounds such a difficult situation for you both.

Please ask for advice from the helpline or ask to be referred to the incontinence service by your GP.

There are many possible solutions.....perhaps a catheter...I don't know but someone will.

There will be help out there.

Don't struggle on alone.

Love

GG

 

19

I know exactly what you mean about the difficulties with the carer system - as the time they arrive is never guaranteed. Yes they are an intrusion - but exhausted carers and not good either - been there myself.

if you sat down and listed all the issues that are difficult at the moment and which ones really need sorting in order to lessen your load -- something might be brought to light that you hadn't thought of before..

Talk it over with your husband and family - do you have a Parkinson's nurse you could talk to?

Thinking of you

Keld

 

20

Just a thought....has your husband lost weight recently? that could explain the leaking pad....if it is not the right size...?

You can also get protective squares that you can put on the sheet and under your husband..My Mum used them and they kept her drier and reduced the washing in cases of overflow.....

You are not alone, phone the Helpline and they may have other more widereaching suggestions.

Keld