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PSP Association
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Hospice is hard...

Hi everyone,

I'm looking for guidance regarding hospice care...Mom lives with me and was just "officially" diagnosed in September, but has had all the symptoms for years. She is bedridden and relies on me for all of her needs. Well, long story short we started hospice care for her in November. Every time she has something new going on I have to explain to them that it is part of her disease...I need support from them not me explaining things to them. I guess I'm just frustrated.

On a side note my Dad is also here with me and he has cancer that has spread and we are just day to day with him also. He has hospice care also and I feel that they handle him better. I guess that's because unfortunately cancer is a common thing.

Thanks for listening

Theresa

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Theresa I can relate to how frustrating it is when you have to keep explaining about PSP, I think everyone on here is in the same boat, doctors are useless, hard to find one that you don't have to explain things too, we have a good doctor, just ask themTo read up on it before you visit them . Yvonne. Sending you a big hug seems like you have more than your share of ill health.

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Thank you πŸ’™

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Poor theresa, not your mom but dad too! well darlin' and then to boot ignorant care workers. ugh....You need to print up cards or a large card with all of her PSP related issues and put it at the end of her bed.......Are your mom and dad in same hospice?

Get some rest

AVB

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Yes they both have the same team which is a wonderful thing.

Theresa

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Well praise God for something, eh!

How are they and you doing?

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I'm mentally and physically exhausted...

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Wow that's a lot to deal with -:( may God look after all of u πŸ™πŸ™πŸ™

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Thank you ❀

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So sorry that you have a double-whammy with both parents who are terminally ill. My wife had PSP and I finally enrolled her in hospice in December 2015 and she ultimately passed in July 2016. So 7 months as a hospice patient is very rare. In the US, the average hospice patient is enrolled and care by them for about 2 weeks. And you're right, they know nothing about PSP or these rare forms of Parkinson's (CBD, MSA, LBD). They're mostly used to dealing with cancer patients, who pass pretty quickly and their main role is to keep them medicated and out of pain. For PSP, they don't usually have that much pain, unless they have fallen, contract a UTI, or come down with pneumonia. Each nurse that would come, I would have to give them a quick overview of the disease. They usually pretended like they know something about it, but I could always tell they didn't. Her primarily nurse did do some research on PSP (I referred her to CurePSP.org). So hopefully you will have one nurse that comes a majority of the time and one that is willing to do a little research on the disease. Hang in there Theresa. You're in my prayers.

Ketchupman

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Yes, we have had the same team since she started hospice and when Dad required hospice Mom's team just picked him right up.

I also live in Louisville KY...small world huh?

Theresa

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Feel free to call me if you'd like to talk 1 on 1. My number is(502) 216-4563. I also lead a monthly support group at the Parkinson's Support Center in Middletown. It's for those with PSP, MSA, CBD, and LBD. We have more PSP than anything. We meet on the first Tuesday of each month at 6:30pm. It's for patients and/or caregivers.

DAN

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Hey Dan, I'm glad to hear from you on the site! A lot of our friends have gone on...

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I know! It's amazing how many we have lost these past couple of months. So sad. Hope you guys are doing well. Stay warm!

DAN

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Thanks Dan, B is constipated with a UTI to boot....I'm just trying to figure out what to do ec says suppositories home health says milk-o-mangnesia....And should I feed him the same amt or reduce it ....he's in pain stomach distended ...more food would cause more pain!

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Senna often worked for Kim. Sometimes enemas would work. But almost always "digital stimulation" worked. Not the most pleasant thing to do to a person, but if you love them, it's nothing.

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I have done most everything...save an enema, suppository, and well that....hmm *~*

AVB

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It's just that psp is so rare, and attacks on so many different fronts. And it affects everyone differently.

You can't blame them for not knowing, at first. After the first visit, you are justified in getting shirty, I say!

Having both parents at home with you, dependent and suffering, I simply can't imagine how you cope. Do you have any help? Company? Respite? Support? How are you doing? Do write again when you get that rare free second, please.

Love and peace, Easterncedar

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I really in all honesty don't know how I'm coping...I just keep on doing what needs to be done. I grieve for them every day.

I don't know what I would do without the help from my husband. I have apologised to him many times for bringing all this to our door, but he tells me it's ok and that he loves them too. I just didn't picture doing this at this time in out lives. I also have 2 adult children that sit with them on occasion, but it's hard for me to leave and just let all the worry go at all. I also have 2 brothers, but I won't go into that...ugh

Theresa

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Yah get Shirty with it! (>.".<) How does one make a shirty face.....Lol

AVB

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Can you switch hospice agencies?

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I probably could, but we really like our team that we have. At this time in Mom's life as long as she is peaceful, comfortable and having her symptoms managed we are ok.

Theresa

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I feel very sorry for you. Your mum is taking too much of your energy, when you should be concentrating on your dad. Hospices are wonderful places. Where are you?

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