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Topic LOVE Hospice!! Go to previous topic Go to next topic Go to higher level

By SandwichMe On 2009.09.03 18:49
We started Hospice care on Saturday for my FIL (it's now Thursday). So far, there have been 3 visits from an RN and a 4th emergency visit when he fell. Social worker has been here twice and today the RN and the MD were here for nearly 2 hours!! It's only been 5 days! We also had the LPN scheduled to come do his bath today, but as of yesterday we're able to have 11-7 and 7-3 covered by an aide here at home. (Not from Hospice so that's costing $$).

Two months ago, he was taking walks with his walker down the driveway and back.

Six weeks ago he started getting agitated and his BPs went really whacky. Very high when he lays down, and orthostatic changes when he sits or stands.

For 15 years he's had high blood sugar and on meds for that. Now, for the past month, we can't keep his sugars up to normal.

He knees are locking up and can't walk without assistance of a walker and one, sometimes two people. Other times a wheelchair. Some days he's in bed all day and other times he can't sleep.

He's so confused and disoriented. He doesn't know where he is or sometimes who we are. He's hallucinating.

The Hospice we are working with is wonderful! I found out that they are voted one of the top five hospice agencies in the country so I'm so relaxed.

The Hospice MD was here nearly 2 hours and just sat and talked with me and MIL. She looks to me to make all the medical decisions (I'm a nurse). The MD spent nearly forty minutes just chatting and getting to know them. He's fantastic. The MD recommended lots of medications being discontinued. Especially the warfarin he takes to thin his blood now that he's falling. That was a toughie.

I am just shocked at the rapid decline he's had over the past month particularly. How long can this go on? I'm so glad Hospice is here helping to ease the transition into letting him be comfortable and STOP trying to fix every symptom. We've lost that battle already.

I just hope that this doesn't go on forever and ever. Each day from 3-11, MIL is alone with him unless my DH or I are home. We're often taking our kids to practice and stuff. Since we live here, we're close, but not always there.

So many of you have gone through this before. I am really feeling like he's in the final months of his life, if that. Honestly...I hope so. I don't mean that to be offensive, but he's so tired.

I blog a lot and started blogging last nite about our days with him from a caregiver point of view. That's helping. I've had emails from several readers today who are experiencing the same things.

Thanks for the vent :)

By annwood On 2009.09.03 21:20
Vent away. Everyone on this forum was there for me at the end and I will never forget that.

It is ok to want it to be over. You know how miserable they must be and you also have come to the realization that things can't be fixed. The kindest thing you can do is make him comfortable. I am so pleased that Hospice is there with you - they are wonderful and they will teach you and your MIL how to let go. You will make it through this and you will remember your FIL as he once was.

We are here for you.

By caregivermary On 2009.09.04 09:09

What is the name of the hospice? Happy to hear you were able to get some help.

By annwood On 2009.09.04 10:19
Mary, Every area has their own hospice. Look in the telephone book for ones in your area. Some are better than others so ask around. The not for profit one in my area seems to be the best but that may not be the case everywhere.

By SandwichMe On 2009.09.04 11:22
Awful awful nite for him and us...he's on the way to the inpatient Hospice unit now to spend the weekend trying to find the right combination of medicines that will help with the agitation and restlessness. He fell twice last nite, the second time he took MIL with him, so she's now injured too.

We are working with a local non-profit Hospice. We are in Pa.

By caregivermary On 2009.09.04 11:22
The reason I want the name is because the one I have isn't quite adequately staffed to handle their case load. It's too much to explain on this site. I have been talking with others in my area and haven't found one yet I feel comfortable with. My husb's Dr. recommended a few but they don't service our area. I still have the one we started with and will not change unless I have a strong feeling any new one will be better. We live in DFW/FW metroplex.

By caregivermary On 2009.09.04 14:22

I was thinking that your agency is a large one and thought maybe there is a branch in my area. Sorry to me prying.

By Mary On 2009.09.04 16:04
My Dad has also had a rapid decline these past few months. I sometimes think he may be near the end but have had others tell me that with Parkinson's Disease a patient can hang on a long time in the end stages of the disease. However, Dad barely eats and drinks so that will certainly catch up to him soon. Sometimes I read my posts from a year or so ago and realize even with the posts of others I still had no idea how bad it was going to get for Dad.

By SandwichMe On 2009.09.04 17:43
Mary, you aren't prying...I don't mind the question at all! It is a local agency though here in our county and not one that is nationwide. They are a non-profit and in my experience as a nurse, those facilities are often more geared toward total family care and not just worried about the actual last two weeks of life. I really hope you find someone as good!

I spent a few hours in the Hospice center and then insisted on MIL coming home to relax, sleep and heal her injured foot from last nite's fall.

FIL is increasingly agitated, combative, angry and confused.

His hands and feet are ice cold and he's got more apnea while he's sleeping. He only had a little bit for breakfast, but he's hungry for the pot pie and ice cream he ordered for dinner!

By SandwichMe On 2009.09.06 16:25
Well, today he has stopped being able to swallow. At least for now. Thankfully he's been resting since last night without any discomfort.

Hoping he'll wake up enough to see some people visiting him.

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