I am almost embarrassed to ask a very basic question....but, as we live in Spain in a fairly isolated spot, I am wondering whether or not it will be feasible to care for Ian throughout his illness with support and avoid a nursing home. It does seem that nursing homes are often necessary from reading various posts.
Of course, here they don'
Sorry....they don't speak English and Ian says he doesn't want to end up in one here. Causing a few logistical worries, though we are only in the second stage at the moment.
Don’t apologise or be embarrassed about anything you ask or write here my lovely! Not everyone needs a nursing home, it simply, in my opinion, all depends on how the patient is, how you can cope mentally and physically, and if you can get carers in? Getting carers in and nurses is often a must, that’s my take on it, I’m sure you’ll get many more replies x
Thanks. Ian already has a carer for an hour a day, after recovering from a serious reaction to toxins 3 years ago. He was still paralysed when he was let out of hospital, but has made a remarkable recovery since then. I have already cared for him while he was bed bound, so I am not afraid of that aspect of his illness. He walks or shuffles with an extended walker (He is 6ft 2in) and on good days manages with a stick. Our life is peaceful and we embrace each day together, even after 39 years.
I guess being ill in a system you don't fully understand adds another dimension to my concerns. But the Spanish are very respectful and caring when it comes to the aged and infirmed. Sadly, the resources aren't always available, though, being quite a poor country, especially in a system where extended families are often the main carers.
Welcome to this site.
Yes it is possible but you will need lots of support in all ways. I can't say more, not knowing your circumstances, but it is a long hard road ahead for you both. If you can talk things through it will help you in the future.
Good luck, from Jean x
Thanks Jean. Ian and I are certainly very open about the situation. I am finding this site very supportive and helpful. People are so kind.
We have lived in Spain for 13 yrs and have some dear friends, particularly from our expat church! They support in most ways. My sister is only half an hour away, too. Sadly, my daughter is in the UK and, with two daughters under 5, isn't able to visit very often. Thank God for FaceTime!
As you will hear from others the progress of PSP is very variable.
I was able to keep my husband at home until he died.
An essential is making sure you get " me time " and others to sit for you.
Not everyone gets all the symptoms but all seem to have some incontinence issues and suffer from impulsive behaviour and apathy and communication difficulties. It is very stressful.
It sounds as if you have already had a lot to deal with and, hopefully, you know you must look after yourself.
Make the best of now !!!
love, Jean xx
Oh for a crystal ball!! If you have good carers and can make all of the adaptations you need to keep your husband safe and have local support there no reason why you can’t continue to live in Spain for at least the near future. My husband is 5 years into PSP and he still ( just about) manages steps up to the house and chairlift. I guess you need a backup plan in case disease progression makes living at home in Spain impossible. We have accessed palliative care support, OT, physio and speech therapy all of which have been invaluable in maintaining as much independence as possible and keeping my husband safe at home. Would be good to explore what would be available locally.
Love Tippy
JCRy, I live in the states, Los Angeles, CA, Caretakers here are VERY VERY expensive. From my visits to Spain, Italy, and Mexico, I have seen/learned that caretakers there are much more reasonable. They are affordable. The key is COST on providing reliable caretaking.
My son did NOT want to go into a NURSING HOME. He was taken care of at home. He lived in his own home (and wanted to remain there) and me in mine. I hired one full time caretaker five days a week who was young, had energy, and strength. I did the care on the weekend. As he got worst I had to also have help on the weekend. I came by several times a day for an hour or so each time. You won't have to do this because you both live together.
I BELIEVE THE KEY IS TO HAVE A RESTED, PATIENT, AND AVAILABLE caretaker 24 hours. What I learned, looking back and evaluating, is that if we could have afforded it, to have had three helpers would have met the demands. ONE helper for the night, from getting the person changed and in bed and being available thro the night (appox 7pm-7AM). SECOND TO GET the person up and being available during the day (Approx 7AM to 7PM) and one on the weekends (24hours from Friday evening to Sunday evening). This allows for all to get rest and away from intensity of PSP.
I had Carlos, a 21 year old, but as Jeff progressed it took it's toll on Carlos. Yet Carlos was EXTREMELY attentive. My son never fell. His constant needs were addressed. Looking back some of the impatience of Carlos (my son would relate to me) could have been avoided. Carlos was with us, had his own room to sleep, Sunday night thro FRiday late afternoon.
I think we all like to believe that our OWN COUNTRY has the best medical care, but I believe there are competent MDs and incompetent MDs all over the world.
AS PSP progressed its demands (compulsive behavior, constant attention, changing soiled clothes and linen, etc) takes its toll on the caretaker. My dentist told me that her aunt took her PSP (ironic that my dentist was acquainted with PSP) husband to MEXICO because the caretakers there were affordable, caring, thoughtful, and dependable. Her aunt had no regrets when he died.
HIred Caretakers become attached to the patient and the patient becomes attached to the caretaker. When I took my son to his general practitioner on an emergency, he was DX with aspiration pneumonia (2nd bout) and required to be hospitalized. When I came out and told Carlos. He burst into tears. I told Carlos to please dry his eyes before seeing Jeff, as I did not want Jeff to think it was more serious than it was. Today CArlos keeps in touch, but has decided that caretaking is too much for him.
If you can speak Spanish, do not worry about Ian. He and the caretaker(s) will be able to communicate and if necessary you can step in. Just be sure you hire COMPASSIONATE, DEPENDABLE, RESPONSIBLE caretakers, and that you are close at hand.
Good luck....prayers.
Thank you so much for sharing such personal details and stories . It has been both helpful, reassuring and encouraging.
Only time will tell how we will manage. I am hopeful.x
I agree with what has been said, you need good careers coming in, you need time for yourself, which is very difficult to do, you feel so guilty doing things by yourself, but you must get restbite to be able to survive, I look after my husband at home, we have good family network and I manage just about, George gets very agitated which is hard to take, we get lots of sleepless nights. Tonight when he went to bed he wanted a table light near his bed, all he has been doing for the last hour is clicking this light on and off. Please make sure you remember to look after yourself. Yvonne xxxxx
Thanks Yvonne. Forewarned is forearmed.x
My husband had had CBD and had that same fetish of fiddling with buttons. Unfortunately he decided to use the nurse call button and drove them nuts until they unplugged it! I asked him what he was doing and he said he was turning it on and off! Not sure what!
Hugs
Jen xxx
I think fidgeting is so much part of PSP my husband plays with his hospital bed controls for hours at night. Once the bed finally stops moving I go in and settle it back to conventional bed position but he would happily go off to sleep virtually standing on head or in a V position!!
But we have not yet had the light on and off - thank you for the warning!!!
Love Tippy
I managed to keep Ben at home until he died last month, we had 2 careers in twice a day to get him up and dressed and put him to bed, that was to be three times a day but he died beforehand. I also two three hour respite periods a week to do my own thing. I was lucky in that Ben was very sweet natured during the illness and slept pretty well unless he had an infection (the most difficult time was before he would accept Dx) He wasn't a big man so I was able to manage him until the last couple of weeks when he became so rigid it was almost impossible to move him, even with the hoist. Our house was fully adapted to meet his needs to enable him to stay at home as long as possible. The Spanish are very warm and caring people and if you could get consistent help I'm sure it would enable you to keep him at home knowing the carers actually do care. I do hope you can get all of these things in place if that is what you both would like. Ben had made his wishes clear that he didn't want his life extended by PEG feeding or hospitalisation to treat infections. He had spent thirteen weeks in hospital after breaking his hip from a fall two years before he died. We did have many medical visitors, SALT, GP,s Physios, district nurses, carers, CHC manager, friends, etc etc. Would you have access to the various medical folk?
Love Kate xx
My wife was diagnosed 8 years ago, is at home. However, I have the benefit of a home health aide for 10 hours a day. She gets my wife up at 10 AM and gets her to bed at 8 PM. So far, works for us.
I kept my sweetheart at home, but had equipment (hoist, stair lift, wheel chairs) to help, and, for the last 16 months or so, someone to stay with him while I was at work (not medical, just company and feeding), then hospice and visiting nurses came in the final weeks. I did all the personal care. It took its physical toll on me and on the furniture - there were lots of falls - but I am glad I did it, of course.
Best of luck,
Easterncedar
We are doing OK at home without help so far. My huz cannot walk without assistance. We use the wheelchair for excursions out and the walker with me in the house. For safety and convenience sake, I help with dressing and tend to all meal making. I hope and plan to remain in our home. I get relieffrom our kids and will leave Jack alone while he takes his hard core nap in the afternoon. Crossing my fingers. We are 7 yrs. in.
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