Care at home

[Sarah1972]

I was recently informed that there would be no way of looking after my mum at home once the PSPA progresses. I can't stand the thought of her not being at home. Can anyone advise on their experience of this please. Thanks

Sarah.

[Georgepa]

That's nonsense , there are a huge number of people here who have looked after their loved one's at home right to the end of life . You will need help , district nurses , Marie Curie maybe ,carers etc . But it is all quite possible . Obviously if particular symptoms occur -hospitalisation or hospice care may be necessary . But there is no reason why you cannot care for your Mum at home for as long as you feel capable .

Georgepa

[doglington]

I am caring for Chris at home. Many others have too.

You need a good reliable support team.

Jean x

[Yvonneandgeorge in reply to doglington]

Also caring for George at home, I agree with George to help is there if you need it to keep them at home. Jean is right about a good reliable team, good DN etc ..... Yvonne xxxxx

[LuisRodicioRodicio]

Hi Sarah!!

In my opinion, as long as possible, the best place for a sick PSP is their home. This entails the need for assistants to help the main caregiver and to be able to cope with the considerable expenses that this generates. It also demands a reasonable good health of the caregiver since the management of all the tasks that it carries with it produces a remarkable wear.

In principle, the limit I have set to send the patient to a nursing home is dementia or the need to apply specialized medical care.

The non-strictly medical parameters that the main caregiver must manage:

1) Avoid falls: transfer techniques, seat belt, wheelchairs, to adapt the bathroom, handrails on each side of the bed, articulated bed, plastic wheelchair (type ETAC) special for hygiene and shower, etc.

She has regularly used a wheelchair since June 2016 (Four years after first symptom) . The wheelchair is made in aluminum and is foldable, easily transportable in the trunk of a car

2) Prevent cold and flu (vaccine could be advisable) to avoid pneumonia.

3) Prevent solids or liquids from reaching the lungs. Add thickeners to drinks. Relatively doughy food and solids in small pieces. Ice cream are well tolerated .

4) Gymnastic tables 6 days a week: passive in bed (Move all major muscles) and active (helped by 1 or 2 people): Go up and down 50 steps, walk 200-300 m, speech therapy exercises, exercises ocular muscles. After that he needs to rest at least 30 '

5) Socialization. Almost every evening, social activity: cinema, city walk, show, museum, conference, visit grandchildren, snack with friends, etc. After that he needs to take a rest. It is advisable to have holidays in places where the moderate climate allows you to go out on the street and do walks-gymnastics as well as socialize. The transport by car is adapted to take the patient and the wheelchair. Similar Citroen Picasso tall seats are recommended. .

5) Control of palliative medication against depression and insomnia. In our case right now: 1/2 Sertraline-50 at breakfast; 1/2 Sertraline-50 to food; 1 Lorazepan-1mg one hour before dinner.

Drops of tear to the eyes upon request. If you have problems applying the drops "Optrex spray" is an alternative.

We have a part-time hired person to perform gymnastics, personal hygiene and dressing. Another person lives with us with holiday on weekends free. Those two persons help me a lot regularly and the children help whenever they can. Also the friends of always collaborate.

We found great help information In the comments of the members of this great association -HealthUnlocked- and also the web "CurePSP": psp.org/ has been of big help.

Releasing the caregiver and allowing him / her to have life outside the home as well as to avoid strong or continuous physical and psychic efforts is fundamental. The main caregiver of a patient of PSP is progressively taking charge of the work that did when the disease had not been shown, plus the work done by the patient of PSP, plus the management of the illness and the people who are forming the team of help. One must also look at the health of the main caregiver is and his/her medical history.

The bottom line is that jobs and occupations of the primary caregiver grow at the same time as age is going up ..... without an important help is very difficult to carry out without a brutal wear.

From my experience and also from my group of caregivers it is essential to find efficient help that allows areas of freedom and leisure as well as vacation periods for the caregiver, far away from the PSP. At least, a week of holidays each six month is advisable.

I hope and I wish these notes are useful.

[Zeberdee]

You do not say who gave you such information which I and am sure many others on this site would disagree with. Obviously you will need help that is a given but caring for a PSP sufferer at home is far better. What needs to be taken into consideration is your mum's wishes because they are very important. My hubby has refused peg feeding and has a DNR with wishes to remain at home. Myself and family totally support him with this decision which was made sometime ago as he is now bed bound and unable to communicate and in advanced stages of PSP. This may seem blunt but it is not an easy road to walk for the sufferer or carer....we must do our level best. Jx

[Sarah1972 in reply to Zeberdee]

Zeberdee I much prefer blunt so no apology needed but a thank you for your response.

Mum still hasn't had the official diagnosis yet as so far nothing showing on brain scan, however all the signs are there. Falls, balance, choking, speech, cognition, stiffness, lack of bladder/bowl control and movement standing up and getting in the car oh and not forgetting the inappropriate laughter.

Mum and dad my children and husband have all moved into a specially adapted bungalow which makes things much easier. So far I managed to stay in full time employment as dad (although 83) takes care of her during the day and I take over after work to give dad a break. So far things are pretty good. We have a woman once a fortnight to thread her face (not sure if PSP makes the hair grow more or she is just unfortunate) hairdresser every Monday and in fridays a take her to a salon after work where we both get very spoilt. We have loads helping such as physio therapist, speech therapist, though not much else they can do now, social worker, occupational therapists who is amazing. She knew nothing of PSP yet researched it and gave us this wonderful website, wheel chair and walking frame. A woman from senses has seen her about her sight and getting her some audiobooks, we are awaiting the falls team to call to make the home safer and help us for what to do in a fall, she has a personal alarm invade she falls and we are getting a community matron to ensure everyone is doing what they should.

After reading all the horror stories about others on here and the help they get I feel very fortunate. Getting mum and dad to sell up and move 200 miles was the hardest part but we are all so pleased they did especially for how much she has deteriorated the last 4 months.

Mum doesn't want to know what is happening to here so I just reassure her when things change that it's the PSP and not her. I have power of attorney to make the choices that she doesn't want to know about. I have tried on numerous occasions to speak to her about her wishes but this just raises her anxiety so I respect her wishes and say nothing. I know she want to go home for her funeral and to be cremated so she can still be in our lovely new home. So that said I think I will leave it there.

My husband spoke to someone he was working with and they said they knew someone and there is no way we could always look after her. This upset me as I know the one thing my mum doesn't want is to be in a home/hospital and alone. It would break my and my dads heart if this were to happen, he has enough to cope with without the feeling he couldn't cope.

Well I don't think there is much more I can say as think I've covered everything. So thank you for responding I apriciate and info or advice anyone has to offer x

[doglington in reply to Sarah1972]

You seem to be doing all you can. With so much support I can't see why you can't manage - as we do. I am 80 and manage.

Keep in touch here.

love, Jean x

[Zeberdee in reply to Sarah1972]

You are doing all you can and that's excellent. Jx

[LuisRodicioRodicio in reply to Sarah1972]

Dear Sarah,

In my opinion you are doing very well.

As my first language is NOT English and I help me from the Google translator my comments are quite mechanical and cold but my feelings are close to the caregivers and patients of PSP.

I feel very identified and close to you.

The best.

Luis

[Sarah1972 in reply to LuisRodicioRodicio]

Luis, not sure where you are from but I am English yet speak it appallingly, so well done you for giving it a go and you do make sense sending a hug your way and hoping your managing well.

Kind regards Sarah.

[LuisRodicioRodicio in reply to Sarah1972]

I am spanish from Basque Country.

I learn from every member of HealthUnlocked every day.

Thank you.

Hug. Luis.

[Richard33 in reply to LuisRodicioRodicio]

Luis,

You are doing really well with your English. The only place Google gets it wrong is that sometimes it refers to your wife as 'he' and not 'she'. But you are a real example to me of what a dedicated carer can do.

Richard

[LuisRodicioRodicio in reply to Richard33]

Thanks for your words.

I must add that, sometimes, her resistance to gymnastics, walking or climbing stairs is about to break the nerves of the caregivers. In this we have to improve although I still do not know how.

Thanks and greetings.

Luis

[Sarah1972 in reply to LuisRodicioRodicio]

Mum had mild exercisesfrom her occupational therapistbut having discussed this with the physiotherapist they decided that all this would do is cause her more pain so we stopped.Everyoneis different though so what works for one won't work for others. I suppose everything is trial and error. All we can do is keep fighting for them that we love. It seems like this site has many many fighters, bots patients and caters.

Keep fighting xxx

[LuisRodicioRodicio in reply to Sarah1972]

Thanks a lot.

Hug.

[doglington in reply to Zeberdee]

How are you doing, Zeberdee ?

I think we are at similar stages.

In many ways it is easier than it has been for years, as Chris is unable to move and communicates by squeeze. He is enjoying pureed food. Apart from that I do wonder about quality of life.

Every time I look at him I remember how he was and I can't bear it - but I do.

love, Jean x

[Zeberdee in reply to doglington]

All I can say Jean is that, like you, we are soldering on. It is so difficult trying to anticipate everything as my hubby just stares at me and I wonder if he recognises me or is it my voice he knows. Cannot squeeze hands and blinking to communicate is now much more difficult as the time to process a question takes longer. Refusal to eat really gets to me as he has lost so much weight and his bones protrude everywhere. Everyday is sadness when I look at him but love is still there. We need something to cling on to. Love Jx

[doglington in reply to Zeberdee]

I know. Its torture.

Love, Jean x

[LuisRodicioRodicio in reply to Zeberdee]

Identified and close to you.

Hug.

Luis

[Cuttercat in reply to doglington]

Dear Jean,

Charles in bed more and more often. Pureed food but we fear he has aspiration pneumonia. We are maintaing.

I can't bear it either but have nothing else.

Love,

Cuttercat

[easterncedar]

I was fortunate in having lots of support, and that my guy wasn't bedbound until the very end. He was able to help me transfer him. I was able to keep him home, with a few times out for respite. His death was relatively quick.

However, there are many for whom home care is NOT the best option for the patient and the carer. The challenges are many and extremely variable. Sometimes the patient needs medical or professional nursing care not available at home, and a nursing facility is the best, safest, most comfortable option. I think making that decision is the very very hardest one of all.

I just wanted to acknowledge that, because I have such sympathy and admiration for our friends here who have made that choice. Love to all, ec

[Sarah1972 in reply to easterncedar]

Thanks for your response and I do realise that I am fortunate enough to make that decision. If it was just my dad then he would have no option.

As much as I hate to think of my mums end of life I need to know what to expect so I am prepared. Blimey I never ever thought I could clean someone after they have an accident but it honestly doesn't worry me, that said I believe it is because mum hates it so much and it really upsets her.

Strange what we can do when it comes to it.

I'm very sorry for your loss it must have been very difficult for you, I hope and pray that mums ending is just as quick, though we're not ready yet. Xx

[LuisRodicioRodicio in reply to easterncedar]

Thank you for your words.

Hug.

Luis

[Katiebow]

It sounds like you are doing everything possible and should be able to keep your dear mum at home, where I'm sure she will feel happier. With lots of help and support she will be able to stay at home even as the disease progresses. CHC funding would help tremendously, does she already get this?

It's amazing what intimate caring you can do when push comes to shove, as you say it's not an issue when you get used to it and you know they are being treated with respect when you can do this yourself. I get a certain amount of pleasure when dealing with accidents and other intimate tasks as I know he prefers me, rather than anyone else dealing with these personal situations. I know that sounds a bit weird but it's the truth.

Sending you love and support

Kate xxx

[Sarah1972 in reply to Katiebow]

Katie, thank you so much for your reassuring words. I'm not sure about CHC is it means tested?

It doesn't sound wierd at all, well I suppose just a little lol but I totally get what you mean

Kind regards Sarah xx

[Spiralsparkle]

Everyone has replied with good words of experience. I hope to keep my Mum at home, this is her expressed wish but sometimes situations will take this matter out of our control. With the right support in place it is possible but sometimes a battle getting it in place. It sounds like you have loads of good contacts in place already.

I worry about what lies ahead but all we can do deal with today. I take a deep breath every morning and go into her bedroom to see what today is going to share with us.... X

[sasmock]

Hi Sarah, my dad is in end stages and wishes to stay at home. He's been in hospital for 10 weeks, and I've been battling for 4 of those to get him home. They told me care couldn't be found anywhere, his needs were too high. I found a care agency without help from the hospital and eventually got it approved by CHC (he had fast track assessment and was approved). Dad is bed bound, catheterised, too ill for PEG so is on pureed food, bowel incontinent, totally immobile, can't talk hardly, and needs bladder washouts. All of this can be done by carers and district nurse. If he deteriorates further, hospice will be on board too. Most of the time, it CAN be done at home. The hospital tried their best to tell me it couldn't. Dad is due home on Tuesday. It has been super stressful, but this group has carried me through x

[Sarah1972 in reply to sasmock]

Hey Samock things seem extremely stressful for you, it must be hell for you not having your dad at home. So pleased you got the help you needed and sorry for all you had to do to ensure this. Life is being so cruel to you and your dad right now. Damn this bloody PSP

Please take care of yourself the best you can.

Much love Sarah x

[Colleeno130]

I kept my husband home till the end and had a team of caregivers. We also had Hospice. He died at home in the morning with just me holding his hand. You can definitely keep a person with PSP home. It is just that you can't do it without help of other family members or hired caregivers. You also need the right home to transport and take care of a person with special needs. I know my husband was happier being home even if he couldn't say it.

[Noella21]

Hi Sarah. That is not true. I have been looking after my husband at home for the last 13 years. The last three I have een battling stage 4 breast cancer. We have help getting R dressed I'm the morning and etging him to bed at night. We have had to make adaptations to way we do some things as the decease progressed. R is.using a wheelchair now all the time. We have purchased a wheel chair van because I can not get him into a car or van. Now we can drive in whIle staying in his chair. We have btought the laundry machines upstairs due to my condition. We also have a porch lift outside to get into the house. This stuff all within the last five years.I live in Alberta Canada. There has been funding for all but the wheelchair van

We mortgaged the house . It was so worth it.

We are no longer confined to the house. We go out a lot. In a sense R is less confined since in the wheelchair.

We love being home together in our own home . A time could come that due to dementia etc. Or my cancer that it will no longer be possible but we have made it all these years and our children support our decision to stay in our home with supports in place. If you doctor won't support you in this you may want to find another one.Our doctor was ready to put us both in a home several years ago when I had a drug reaction. My kids refused and h3 has apoligised since . Just make sure you put up a united front. It helps if your family is on board. Discuss these things before you get in a crisis situation. God bless you both . Look forward to seeing you on line more. Welcome to the group.