RESPITE FACILITIES

Patients living with long term neurological conditions spend long periods of time at home. Respite admissions in non hospital settings can be required to alleviate the caregivers burden and sometimes are used for physiotherapy intensive treatments or complementary therapies courses.

No participants experienced an hospice admission because hospices in our region do not offer admission for non cancer patients.

Interviewees reported comments - both positive or negative - about previous experiences in respite settings. 13 of them stated to be keen on a respite admission or that they had had a previous good experience with this kind of service. Four were contrary to this possibility for previous bad experiences or because did not want to leave their homes.

Some carer recognise openly their need of a period of relief from their task of caregiving, above all when they face the risk or the need to be admitted in hospital for some health trouble.

CMS1, wife of PMS1 a 53 years old gentleman, diagnosed 18 years ago, quadriplegic, using NIV in the night, totally dependent in the ADL

C=About assistance well, being retired I can manage him at home: but a respite care admission is necessary! When I had to went to the hospital for surgery they told me that the only possibility to care after him when I was there was to admit him in the hospital also, that’s very sad..”

PPD2 (male, age 70, fluctuating motor symptoms with freezing episodes alternate to severe dyskinesias) CPD2 his wife

C= last week I asked if there were structures were he could stay just in case I had to be admitted for a stroke.(…) Yes, because I had a mild one recently and if it should happen again? He can not live alone. We would need a place where he could stay for 1-2 weeks if I had to be admitted.

Others consider the option of an admission period in specialized rehabilitation centres in order to have time to deal with other problems like the wife of this patient testifies

PMS2 (male, age 43, quadriplegic, can only move his neck, totally dependent in ADL), CMS2 his wife.

C= I could let him to be admitted at Don Gnocchi for 20 days.. he’d have his water gym, but who’d stay next to him? I can’t, I must take care of my daughter too. She suffers of a juvenile form of rheumatoid arthritis and, you know, I have to go to Milan twice a week for her injections!

P= yes, in cases like ours 1+1 is not 2, but 3 or 4! (meaning the burden of care on his wife that has to care for him and their daughter)

Some participants had already experienced respite admissions and discuss pros and cons.

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This patient was very enthusiastic about her respite admissions in two centres far from Turin city, but specifically adapted for patients with advanced neurological diseases

PALS7, (woman 60 years old, diagnosed 12 years ago, quadriplegic, dysharthric, dyspnoeic, NIV 24 hours a day) and her husband CALS7

C= in Dr Mora centre in Pavia there’s the chance to stay with her in the same room. That’s important. Pavia is very well organized.

P= yes, before we stayed in Veruno. There’s the neurology department now directed by Dr Pasetti. Pavia somehow is better because they have the social assistant inside that indicates all bureaucracy pathways to receive aids and services and, if necessary, directly contact your local social assistant. In Pavia you receive PHT daily, there’s the SLT, nutritionists, and psychologists(…) P= Veruno is a private, but operating with the NHS, centre where I spent a period of time. My husband was not with me. I had my electrical wheelchair (my Ferrari!) and I went around on my own. There were volunteers who spoon fed my at dinner and the nurse who did it at lunch. Personal care was provided by the centre personnel.

This family experienced a respite admission in China where they went to try an experimental therapy with stem cells. Although the therapy was not successful because the disease was not relented they had a very positive impression of the care received.

ALS4 (male, 61, quadriplegic, on a wheelchair, cachectic, severely dyspnoeic in NIV diagnosed 3 years ago) and his wife CALS4

C= respite care is fundamental. We received it in Beijing in China. He had 2 sessions of physiotherapy per day, speech and language therapy, massage (…).

We, as family members, had the chance to stay with him, have meals with him, sleep in his room, but we could also go out and have a rest as well because he was very well cared for by the clinic personnel. It was like an hospice!

One carer talked about the costs that she has to pay to have respite periods for his very disabled husband in a nursing home

CPD3 is the wife of PPD3 a gentleman in his 70, diagnosed 27 years ago.

Cognitive impairment, Wheelchair bound, staying in a long term facility I= how did you find this nursing home?

C= he was in the waiting list. It’s his third re-entry here. Before he came for 1 month, I paid for it, and them he came back home. It’s not free. The respite care admission has to be paid.

Now he’s been here for 10 months. I pay a part of the charge, the rest is paid for the municipality.

Experiences were not all positive. This MS patient with four decades of diseases on her shoulders is one of the founders of the Turin MS patients association section and collaborated to the creation of respite admissions between the association and Don Gnocchi centre. Despite this she reports not to be satisfied of her periods spent in that facility

PMS4( 71 years old woman diagnosis 42 years ago. Paraplegic, wheel chair bound, lives alone helped by paid carers)

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P= sometimes I spend 20 days in Don Gnocchi centre, it’s a kind of respite admission. They know me very well and so give me this chance. I don’t like it very much because I have to share the room with elderly women praying all the time, or crying, and after few days you became more depressed than before.

Than somehow, you lose your independence. I won’t go this year for these reasons

There are also situations where carer and patients do not agree about this issue. Carers feel the need of a respite period, but patients can feel this as an attempt to place them out of their homes

CMS6 wife of PMS6 a 53 years old gentleman EDSS 9, fed by PEG, almost totally dependent in the ADL

C= once per year he spends 3 weeks in Piancavallo, a rehabilitation centre where he goes for respite care.

P= I don’t like it because it’s a hospital. I like my home, I want to stay in my place (…)

C=Another key point are respite care admissions in the hospice. They are strongly required.

Some facility specifically created to provide respite care for neurological patients can not satisfy the needs of very advanced guests who are too ill to participate to social activities resulting frustrated and abandoned.

PMS3 (male, age 46, blind, quadriplegic, muscular spasticity, fed by PEG), CMS3 his wife.

C= he spent a period of time at Villa Fiorita, a nursing home specialized in MS care. I had to put him there because I was going to be operated and then I needed a period for recovery. I went to meet him before my operation and it wrung my heart. He was alone in a corner of the living room. While other patients were consuming their meals he couldn’t because he is fed by PEG.

Nobody was caring for him. His nose was dirty… once his PEG tube lost some liquid, but nobody saw it and I discovered it when he was all mucky.. He was the one in worst conditions.. the others talked to each others, had meals together..

he couldn’t because he didn’t speak or eat.

Some setting like general nursing homes can even worsen physical conditions of patients admitted for respite, this was certainly the case of this old couple

PPD5 (woman age 78, cared for by her husband -CPD5- at home)

C= we had a respite care admission in a private nursing home paid for the NHS.

We both went there because I was very tired, having to care for her alone, and she required some physical therapy. It was our GP who filled the application form for us. She had daily sessions of physiotherapy and speech therapy. It wasn’t very good. We had a double room where we could stay together, but food wasn’t good at all. I had worsening of my rheumatic pain. When I came back home I wasn’t able to walk anymore. Imagine that I entered walking on my legs and when I came back home I needed a wheelchair! Fortunately I recovered after 20 days.

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This couple, even if previously declared to be tired and in need of help, clearly decline the possibility of a respite admission

PALS1 (male 48 years old, bedridden quadriplegic, totally aphonic, tracheostomized.) and CALS1, his wife

P=(communicating through an alpha numerical table) Respite care? I won’t go anywhere out of here (he wants her to show us the rest of the house and the garden)

C= me too, if I have to be helped I prefer someone coming here. I don’t want him to risk further infections or other complications

Social services and technical support

Patients severely disabled for a progressive neurological disease are likely to need some help from the welfare social service. In Italy social assistants are professionals working for the local offices of the ministry of the welfare. This service can be accessed by anyone with economical hardship, physical disability or social impairment. The main help provided by these professionals to families in which a severely disabled person lives is based on financial benefits like the sick benefit, accompaniment check or other grants to be used to pay for home assistants that care for disabled patients. They also provides information about available services to the person and can refer applicants to transport companies to obtain ambulances or equipped taxis to move patients toward hospitals or ambulatories for routine visits, physical therapies and so on. Finally these offices are those providing technical equipment like electronic communicators, wheelchairs, orthopaedic beds, aids and devices.

EQUIPMENT DELIVERY, FINANCIAL BENEFITS AND TRANSPORT