PSP Association
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New home-hospice patient

First time here. I am the spouse caregiver of 72 y.o. PSP patient who was officially diagnosed 3 years ago but has had symptoms for 12 years or more. His decline has become more precipitous over the past year. Specifically, balance and falls more frequent, swallowing is problematic and frightening when eating and drinking (honey thick to pudding thickness), speech nearly impossible to understand, slowness and rigidity horribly pronounced, sleeps more than 13 hours per day in spite of taking Ritilin 5 mg and naps too!

We were (I mean to say, he was) admitted as a home-hospice patient. We are getting accustomed to the extra "help" of two 1 hour CNA visits and 2 LPN visits per week in addition to 10 hours per week of CNA help from a private agency. We are both comfortable dealing with end of life issues but I have found that since hospice, my emotions are on the edge and I cry frequently and without reason (I know, ridiculous -- just slightly out of touch with my feelings).

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Hi it is a very emotional process and very understandable as I feel like this at times myself. You have to let it out xx

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I usually say "we", too 🙂 This crazy journey does sweep up more than one person.

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Welcome to group no one wants to belong to.

My goodness hubetsy you have been at it a good long while,not a wonder your out of sorts with your feelings.Hang in there.

Dee in BC

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Welcome to this group, Hubetsy :-)

12 years! Your spouse is an outlier for sure. I guess that's what makes for the average longevity of PSP patients: the short, medium and very long-lived ones. A good thing in so many ways to have survived this long. But also can be a hard thing, as it's a long time of emotional as well as physical wear and tear on you!

You sound very experienced with the challenge. It's good to have a place to share your knowledge with others and know that you can also just "rant" when you need to!

Anne G.

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I am in therapy dealing with my issues of shame. I put my husband in a nursing home.

It is just a different hell.

PSP is hell.

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Oh I feel so so sad that you feel that way. I also compare that we placed my mom in a care home and others manage at home. However, I have made peace with it as I realize that

A) every psp sufferer has different needs

B) every caregiver has differing capacity (there is no shame in admitting you are not equipped to do 24 hour care)

C) it is more caring to place a loved one in a care home than lack the physical and emotional ability to care for them at home and then do it very poorly

I hope you can also come to terms with that.

Now I go visit very frequently and can lavish love and kindness and compassion vs always being focused on tasks.

Hope that helps you some although I know it’s not actually that easy to get to the place I am at.

Be kind to yourself,

Erna

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Thank you so much.

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Hi Kmacgamwell

I am so with Erna on this.

You are not alone on this care / guilt thing. Its fairly universal Though some of us feel it more deeply. It hammered at me for a while. Dreadful feeling. You must love your husband very deeply.

We are deeply 'programmed' to care for those we love who are vulnerable. This is rooted in the Limbic System (emotions and primitive drives etc) which is not subject to the reasoning mind. It is subject to other forms of learning though and so its responses are open to modification.

As we have progressed technologically and the extended family is, to a large degree, fractured in terms of group care and support then care is thrust onto one or two individuals. That burden of care very often exceeds our limits and we are forced to resort to Nursing Homes.

The Limbic System does not 'understand reason' and so it is that many of us, including myself, feel guilt. Guilt is one of the limbic system's sticks it uses to try and correct us. It is trying to make us do the caring for the vulnerable loved one. This is a very deep drive within us. Functionally one might imagine that it's ancient role is to keep the 'group' viable and intact. For tis system of 'thought / behaviour' was there long before we developed a cortex with higher level thinking.

My solution for my guilt is to see Liz as often as I can and to do the most I can for her.

Most of the time my limbic system is assuaged by this. If it gives me too hard a time I sit and contemplate all of the good care and those caring for her as well as my visits to her. Gently push away any doubts or guilty thoughts and re-concentrate on the good care and love. It's like a lullaby to the limbic system. Gradually the guilt diminishes as that more primitive part of my brain learns that there is no issue.

(This is a third wave cognitive behavioural psychology approach)

That works for me, but we are all a little different.

I do hope this helps a little.

Just keep reminding yourself you have done what you can and that he is getting care you would not have been able to deliver.

Warmly

Kevin

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Oh, Kevin, you are so knowledgeable. I had never heard this before and am definitely going to try to learn to sing lullabies to my guilt!

xoDorie

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Hi Dorie

No, it was one of my fields - they managed to teach me a little. ;)

Good luck.

xxx

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Dear Kevin, You could write a book! In fact, when you add up all even just your informational posts, there is a book there!

This one is a real keeper. I keep my own list of super helpful strings, quite apart from the search function so I can read them again and again....

Thank you 😊🙏💖

Anne G.

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Thank you - (embarrassed a little).

Your posts help me a lot too.

Thank you.

Together we all make this a special place eh? (Canadian Eh) :)

I will cheat and copy your icons - they are great :)

😊🙏💖

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Yeah! You can be an honorary Canuck, eh? Shall I send you some maple-flavoured Timbits? Lol 😂

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I love BC - The people and the food the land, but maple flavoured timbits? - too much!

They are highly addictive.

Sold by dealers I expect.

😂

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In fact......I urge you to post that whole reply on the limbic brain and caregiver guilt as a separate string with its own title so that others may benefit when searching?? 👍👍👍

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I shall.

Though there are so many great voices here, some of them occasional, others quiet but with deep insight and I am trying not to dominate the forum.

Thank you.

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I dont think anyone would see it as dominating: people are free to view or ignore posts as they feel, and.from the responses you can see already that folk found it helpful. (Did anyone think Strelley was dominating,?? ;-)

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Thanks

You've read Strelly's posts?

He was amazing - got me through the early day's.

Great man. Miss his voice.

:)

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Nice to reading you. Be sure, your posts help a lot

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Thank you

Wishing you both the best on this rocky road.

Warmly

Kevin

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Thank you so much for your sharing. I, too, have been struggling with guilt for placing my husband in a nursing facility. Some of the adult children want him home but aren't able to emotionally handle the situation or visit even in the facility so I know the caregivers and I would be alone. I feel better about my decision after reading your post.

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Me too Mikey12345, Kevin-1 has helped me immensley with dealing with the guilt of putting Leon (hubby) into care 6 weeks ago, I am still so so torn.

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Thank you for your open hearted post which helped me too.

healthunlocked.com/psp/post...

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Please do not feel shame or guilt. When the need comes, my husband will also have to go to a home. As he ages, well, so do I and I know I will not physically be able to care for him in the capacity he will need. But, I will go every day that I can to the home and help care for him and let him know I am still there.

Continue to be as strong as you can. Try not to let regret over rule love.

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Hubetsy, I don’t think you are out of touch with your feelings at all. I think you are now letting your emotion out. I am not where you are on this journey but I certainly can see myself in your place. I know so often when I am faced with stressful situations (like going for a mammogram after having had nine biopsies), I find the strength to get through it. Then, when it’s over, I just let all that emotion flood out! You have, so sadly and unfortunately, been moving through this journey knowing you would one day have to face hospice ... and you’ve done it! I say let yourself purge all that pent-up emotion.

xoDorie

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You are correct to say “we”. When this ugly disease strikes our partner, it strikes us both. We just have to deal with different issues of the disease.

I also continued to be amazed at the depth of insight and wisdom that is accessible in this forum as seen in the responses here and to other posts. I am uplifted by each thread I read.

No wisdom from me, but just another caregiver that feels you pain offering thoughts of concern and compassion as you deal with this phase of the disease.

Thoughts and prayers to you,

Bobby

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Hi hubetsy

It sounds like you have done a fantastic job getting good care in place. I expect that involved a bit of a fight and a struggle.

Are you out of touch with your feelings I wonder? It sounds to me that you are processing them in a very healthy way. You are in extreme circumstances and perhaps, like most of us, just have a lot to process.

PSP and CBD are a real emotional roller coaster with added wringers. I have had to struggle, like many others with this too.

I am about to do a post on ways to manage emotions which become intrusive or disabling in some way or other. Hopefully you might find something in it of use.

Warmly

Kevin

PS - The post is here:

healthunlocked.com/psp/post...

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Oh no. You are obsolutely not in any way out of touch with your feelings. This is hard and a natural part of it all. Talk more later. Praying for you. I am going through it too..

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Dear Hubesty, Thanks for sharing your emotions and you are a great example of courage, dedication, commitment and love for all of us. Tears help to relieve all our frustrations, feelings and emotions that came with PSP. A hug, Patricia

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Lovely hubetsy,

Sharing 12 years of Pakinson and 3 years of PSP, with a loved one is an extreme effort, although the caregiver is getting used to that "new normality".

The patient only resigns himself and wishes to be able to see the sun rise the next day, because that is the life instinct.

It may be the most intimate reaction of the patient and the caregiver is anger against the disease. After the anger, guilt comes, because the disease does not answer our questions, not even the doctors.

Guilt does not help to take care of the sick person or the caregiver. Cry whatever you need but do not destroy yourself. Smile please, and take care. So you can visit him frequently with good mood and love.

All I say to you now, I am telling myself too.

My sister has hold the same long way. She has only a few chokes a day but a pronounced legs stiffness and more than a fall a day. I am seeing a wheel chair at the horizont, but I am alert of that and will look for psicology assistant to help her bear this issue.

Warm hugs

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