PSP Association
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Respite care at home

Hi

Has anyone had respite care delivered at home from someone living in?

The hospice don't do inpatient respite care unfortunately, which is the only place Mum is likely to agree to go to.

I need a break as can feel my patience has run out and feel relief when Mum goes once a fortnight to day hospice. It isn't her I know but her moods and behaviours are making me lose my sanity. I know people take it out on their closest but it is so hurtful at times. I can't do right for doing wrong. Her memory and confusion don't help matters.

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Hi Spiralsparkle;

So sorry that a more knowledgable member isn't online at the moment :-/ Ihaven't got advice - only sympathy. I don't know how you do it - even with carers in to help out. The physical toll is bad enough; to have the psychic drain of dealing with dementia as well seems...unbearable!

You MUST get a break! I hope you'll be able to do whatever it takes to get one.

Sending you a hug and hope for a break xxx

Anne G.

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Dear Soiralsparkle

I shall be watching replies with interest. Up until last autumn my hubby has been to his brothers for short breaks or another brother has come here to stay. But it is all too much for them now. so I have bitten the bullet and starting making arrangement for a live in carer for a week in April. Just at the planning stage with the agency whom we have daily carers from. It is very expensive and will not be able to afford this approach again I think, but I so need a break to look forward too. It is also a stepping stone into respite .

I have just started the CHC process off hoping we may be able to get some form of respite package but I know it takes a long time.

Good luck hope it all goes smoothly

Love Tippy

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We've been denjed chc twice and I don't have anything left in me currently to appeal.

We have direct carers so not via an agency so it is hard for me to know who to go to as had nightmare experiences with agencies in the past.

How is the planning going? Id be very interested in their approach to putting this in for you.

I've got no family to help unfortunately.

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I am trying not to be overly optimistic about CHC. Funding!!! We use Bluebird care have a planning meeting with them next week. Have had to submit list of all meds, daily routine programme. Good to hear others have found live in carers have worked well.

Love Tippy

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Hope it works out well for you on all fronts x

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Are you in the US?

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Are you in the UK? If so there is a company called Country Cousins. Expensive but very good. You can look them up and phone them for information.

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Yes in UK. Thank you

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Hi rog always had live in care when i had respite , the care agency had designated carers who chose to work that way, we did have CHC and they were happy to fund it every 12 weeks. It bizarrely was cheaper than a nursing home. Lovely guy used to stay.

Julie

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Ah that's sounds like worked well. I do feel be much better for her to stay in familiar surroundings. I don't have CHc but do have a budget for respite from social care that can use. Was it a local agency to you or a national company you had?

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Caremark which i believe is franchised nationally

Julie

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Thank you. Will have a look at those also.

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If anyone in US knows something comparable here, or really any assistance that is not for those with low income I would be interested in hearing from u. We have LTC policy, but before I start using that I wanted to use Medicare Home Health, but they will not allow us to use H Health if I am able to get him to any outpatient therapy appt. There is an elimination period on the LTC plans which means we have to pay out of pocket for that length of time before we can use the policies we have and are paying for each month.

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I have some experience to relate. In September Jon was awarded CHC funding for 4 visits a day by two carers for an hour each time. I needed to go to France in October to sell the house we had there. Our care agency agreed a live-in carer whom Jon knew well. He was at home and the agency just sent one additional carer for each visit so they could do the manual handlo g necessary. The agency also swapped the main carer out to give him his necessary breaks. It was going very well until Jon aspirated and ended up in hospital with pneumonia and I had to come back abruptly from France.

It suited Jon much better than his previous experience of a week in a care home.

I would love to do it again but I fear the agency no longer has the spare capacity.

Rosemary Rx

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Yep always the issues of capacity. The care system needs a big helping hand to keep up with the demand

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Hi Spiral

I feel your pain, we also have applied twice and twice been turned down for CHC funding and also don't have the energy to appeal. I am reading this thread with interest too. We have 2 carers three times a day but need a fourth call out as Mums pads need changing more often and it needs 2 carers to hoist Mum. We have a cleaner and do internet food shopping, but think my Father is going to need respite soon as he is in his eighties and its too much for him. The idea of a live in carer for a week sounds like a great idea. My lovely Mother did have a 4 week spell in a nursing home last November but she got considerably worse as a result. I think we will go down the line of a live in carer too...maybe you could let us know how you get on with it? Thanks Mx

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Will do.

I have the admiral nurse coming next week so going to ask her to have the conversation with Mum about respite break and if she knows of any good providers locally. The country cousins website does look good though so will contact them I think too.

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I keep meaning to arrange a cleaner but my motivation to do anything is totally gone. Apart from making sure Mum is ok & cared for.

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Hi, I know we spoke about this before, so forgive me if I 'm repeating myself (memory is awful these days)! Have you tried Bluebird Care? They have a Shrewsbury office so may cover your area - 01743 874343. Their Stafford office were the ones who agreed to come and live in with my dad before we made the fateful choice of the care home instead. They were expensive, but sounded very good. If there's anything I can do to help you, just ask. I have no idea how anyone manages this alone. Sending hugs x

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My memory left the building months ago.

I don't think I can manage anymire without a break. The physical side I can deal but not the worsening cognition and her hostile mood to me and an angel with everyone else. My patience has gone so know I'm not helping the situation either as she is picking up on my angst.

Thanks will contact these also.

Hugs to you xx

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I don't have any practical advice for you, Spiralsparkle, but I do sympathize and hope you get some help and rest! Rest is key to survival and sanity and so hard to come by. Do something nice for yourself, if you can. Peace, Ec

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Thank you x

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Hi Hun

The only think I can think of is live in carers, if your mum won’t agree to going into a home....for respite, but I don’t know how much of a break that would you? I suspect not enough !

Forgive me because I haven’t read the replies yet......

Where are you on chc? X

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If get live in for respite I plan to go somewhere for a break, not stay here also. Id rather her stay at home anyway.

Got to appeal but not got it in me or the brain matter to do it.

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Have heard really positive things about Country cousins. Hope you can find good respite care. Agree you need to get out of the house whilst carers staying in order to get a proper break.

Take care of yourself

Love Tippy

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We found with my Mum’s application for CHC that it was really beneficial to have the OT from the local Hospice present for the assessment. My Mum was turned down the first time but had deteriorated enough to get it second application. As other people have said you must have a break and maybe when you have refreshed you re apply for CHC , I find it staggering that peop,e with PSP or CBD get turned down. I don’t know what we would have done without it. The CHC co ordination has been really helpful once Mum got the funding. Xxxx

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The Hospice haven't been at all helpful on CHC front unfortunately.

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I am sorry to hear that. We have found the Hospice in my mum’s town to be the gateway to so much info and support. I hope you can sort it soon x

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Thank you x

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We are fortunate here in rural Pennsylvania to have three neighbor ladies that share responsibilities to provide live-in assistance to my mother, thus giving my 87 year old dad a bit of a break. We pay them, but they are very reasonable and great neighbors/friends, who are also well informed on assisting under such circumstances. Ascera Care Hospice also provides weekly visits by a Nurse, and thrice weekly visits by an aide that helps my mother shower/bathe. And monthly, a social worker and chaplain visit and provide support to us all. I am sorry I can't help you any further, as I am limited in my knowledge of the UK resources available to help. MEDICARE here does provide for the hospice with few limitations.

Cheers!

Dave

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