PSP - progressing right along

[journeyofjoy]

There's a reason they put "Progressive" in PSP. At last update, Sandy had a high fever and confusion on Thanksgiving Day. The Hospice nurse said this could be the beginning of the end or he could snap out of it. He did snap out of it later that day, after sleeping several extra hours. He's declined quite a lot in the last week. He's in bed 21 - 24 hours/day now. He likes to get up and sit in his wheelchair at the computer, usually every day, but gets so tired and uncomfortable that he's back in bed after 2-3 hours. Plus the severe leaning makes it impossible to stay in the chair. The leaning comes and goes although most days are "leaning" days now.

The Hospice social worker came today and we are signed up for a five day respite in mid-December. Right between two family parties at our house. They had one opening and it turned out that it worked right into our schedule. Thank you Lord for looking out for us! I'm not exactly sure what I'm going to do with this amazing gift. I want to spend it wisely. Would like to stay home and catch up on things although don't want to spend it all working, cleaning, doing paperwork, etc.

The Hospice folks today said they think he has months or less. A month ago, I would have guessed maybe two years, that changed to a year about two weeks ago. Now, I think a year is pushing it unless he has a long plateau. We've definitely turned a corner where I need to increase caregiver hours. I've been fairly conservative with funds, not knowing if this might go on for years but I don't think it will. I do not want to spend our time together strictly as nurse and patient. This is not how I want to remember this. I want to be his wife again.

Some days he looks so weak, and others he perks right up. The Hospice people say this is how it goes.

Thanks for listening and caring. And any input, as always, is welcome. Joy

[honjen43]

I can relate to this! My hubby had times when he was sleeping heaps and then became more alert for a time.

Each time it happened it was a bit like he had had a stroke. The increased sleep pattern was a need to recuperate from some 'event'. Looking back I could see a pattern, that related to a change in ability or behaviour. Even hospital staff sent him for an x-ray in case he had had a stroke. So it isn't only us carers who see changes!

Keep a eye out for how frequently these sleeping periods seem to occur as I felt this was an indication of a faster pathway down. SADLY!

It may help you to understand what sort of timeframe is involved.

With more time sleeping comes the difficulty getting meals into the time available. Try not to let him miss them as that reduces strength, willpower, etc.

Watch for reduction in eating portion, too. And for coughing and lapses in ability to swallow.

My love also found it increasingly difficult to get cup or spoon to mouth, as in the hesitancy of Parkinsons. He was quite annoyed when I tried to help, or speed things up! Then got too tired to finish a meal and fell asleep over it.

I began using a straw when it was difficult for him to hold a cup. The real indication of a downturn was when he could not coordinate the suck and swallow, and did not have strength or understanding of how to suck the drink right into his mouth so he could swallow. His tea level was 'stuck' at the top of the straw and he seemed unable to do more.

Therefore give him what he likes to eat. If jelly and icecream is all he has, at least it is something inside! He may get given fortified drinks. These can have a funny taste to them. I didn't think they tasted that great! So if cream, yoghurt, chocolate drink, Complan are what are needed, so be it.

Big hug!

Jen XXX

[journeyofjoy in reply to honjen43]

Thanks, Jen. I think the long sleep was due to the fever. But who knows. The nurse says patients with brain disorders sometimes have trouble regulating their body temperature and can run fevers even without an infection present.

She said his lungs on the right side are clear as a bell. Left side not so much. Interesting that everything started on the left side and it's always been much worse than the right. Now even his lungs are acting up on the left.

He has cut down his food intake. Just doesn't want as much anymore and skips lunch some days. He's still eating enough, just less than before. It's been difficult for him to get a spoon or cup to his mouth for quite some time. I feed him myself sometimes just so he can get the food in. It's frustrating for him to work hard to get it close to his mouth only to have it fall onto his lap.

I honestly hope we do not have to go to the "end" of this disease. It sounds sad but as you know, it's so hard on him and on me. No good outcome either way.

Thanks for your input. I always like hearing from you.

[honjen43 in reply to journeyofjoy]

Your nurse is right I was amazed that these diseases could affect the autonomic nervous system. We experienced high BP too and sudden falls of BP on standing. At this point doctor removed his BP meds as did not want to lower a BP that was going thru the floor anyway.

Keep on keeping on!

Hugs

Jen XXX

[journeyofjoy in reply to honjen43]

Thanks Jen. It's always helpful when others have the same experience so we know it's "normal." Normal for this disease.

[Hidden in reply to journeyofjoy]

Funny you should mention regulating body temperature, I'm always hot especially at night and have had my temperature taken morning and night for 5 weeks whilst in hospital.....always reading normal. thinking of you both.x x

[journeyofjoy in reply to Hidden]

I'm sorry you've been in the hospital for so long. Thinking of you too.

[Dadshelper]

I think extra help is a good idea. Getting back to a normal relationship may be what the both of you need.

Ron

[JCRy]

What a great photo. In your faces is proof of a journey of joy despite the heartbreak and pain.

Thank you for sharing so deeply.

Big hugs, Juliet x

[journeyofjoy in reply to JCRy]

Thank you. I think I am much more open than ever before about sharing. With this disease, all the medical people, caregivers and nitty gritty of real life stuff, you kind of lose any ability or desire to be private. It'll be interesting to see how this changes once this journey is over.

I see that you are ex-pats in Spain. It sounds lovely. Do you have family there?

[JCRy in reply to journeyofjoy]

Sadly, my daughter lives in the UK with her family, though we video chat often. We have only the one child, but she is the best!

My sister, who lost her husband earlier this year, lives only half an hour away, so that is great. She isn't able to help with Ian's care, but her moral support is good. Unfortunately she is a nervous driver and doesn't visit much. Because we live in the countryside, we are accessible only by winding roads and a dirt track, so visitors are few. That works for us, though. Those that come are quality friends and Ian isn't overwhelmed with callers. Ian has always been quite a private person.

As his communication skills deteriorate, so social interactions become more erratic and unwelcome by him. Our good friends and neighbours understand our situation and have generally been very thoughtful and considerate.

We have no complaints. Our lives are filled with love.

Thanks for asking. Much love, Juliet. x

[AnneandChris]

Dear Joy

This sounds so familiar.

Chris is back on antib's with another chest infection. He is leaning over and seems so tired all the time. When he is poorly his saliver seems to be a lot worse. I just don't know for how much longer he can continue, he is looking so frail.

So my dear all we can do is keep on keeping on.

Hugs

Anne

[journeyofjoy in reply to AnneandChris]

Anne, I am sorry. It seems that you and Chris have been through so much. Sandy looks frail one day and perky the next. God only knows.

We will keep on keeping on. And you too.

[Hidden]

As has been said on here before at the end stage you should be his spouse not his care giver. Let others do that.

Larry had gone in for respite care. By the evening of the third day he was failing. I told the hospice staff to make him comfortable. I turned his care over to them to be his spouse.

[daddyt]

Keeping you and Sandy in my prayers.

Tim x

[journeyofjoy in reply to daddyt]

Thank you for your prayers. Faith is what keeps both of us going. We know there is a future beyond this.

[rnpacu]

MY PRAYERS ARE WITH YOU AND SANDY.

XX MariaElena

[journeyofjoy in reply to rnpacu]

Thank you!

[Annah33]

Both of you will be in my thoughts and prayers. I myself am getting more tired..and I can tell you getting extra care and support which I have from my local hospice as I live on my own has been so helpful. I take one day at a time and don't think what tomorrow will bring....If I don't eat much one day I have fluids and don't worry. Try for your own salvation to take one day at a time - your husband is so lucky to have you but I am sure also that he wants to leave this world knowing that you were the one lady he loved to the end and that you were not exchausted in just looking after him. Let carers do all the practical thinks and you just relax and enjoy quality time with him. Much love to you bothxx

[journeyofjoy in reply to Annah33]

Thank you for your kind words and prayers.

This must be so difficult to be on your own. Do you have plans for having someone stay with you or for going somewhere else should things get worse?

[Annah33 in reply to journeyofjoy]

Morning, I shall go into my local hospice where everyone is so kind and caring. You take care both of you. Much love as my carer is here with me now.

[Nanny857]

My thoughts are with you Joy. You are right to want to be his wife again. W went in for respite and I became his wife again and enjoying every minute of it.

Lots of love Nanny857xx Ps

[journeyofjoy in reply to Nanny857]

I re-read your post from nine days ago. It sounds like he's still in respite. I'm glad you can get some rest and enjoy your time with him. Thinking of you as you go through this.

[Nanny857 in reply to journeyofjoy]

Yes, he's still in the nursing home and comfortable. He had made out an Advanced Care Plan which stated he didn't want to go to hospital. xx