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Old 08-01-2009, 08:54 AM   #1
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Hospice visits

Yesterday, I met the RN that will be in charge of daddy's care. She is amazing, lovely and kind. Her name is Shirley.

She talked to my husband and me at length - like, an hour or so - and I love her straightforward method of informing us. Then she went and saw daddy, and said, "He's very debilitated." She also modified the "days to weeks" to be just "weeks". His heart is still working fairly well, but he is losing weight like crazy and only drinking a few ounces of liquids a day. Lots of new terms to learn - she said that the body wants to die "dry". If he is not wanting liquids, that is his way of shutting down. He is non verbal except for "yeah" or "no", and that is only about 20% of the time. She will be returning every Tuesday and Thursday.

Two hours later, we met the CNA that will be bathing, shaving, bed changing, etc. The only problem with that is that she will be here between 10 and 10:30 in the mornings, Mon, Wed, Fri, and by that time, I already have daddy changed, clean and his bed changed. I can't let him just be in his nasty diaper and if the sheet is wet, he cannot just lie in it. So we will see what we can do about that. I can hold off on his shave, and he DOES need a bath often, so it's going to be wonderful having some help.

We also received a box of medication, called a "comfort kit". I will have exactly nothing to do with any of these medications, as they are powerful and meant for his last days. Morphine, etc.

It will be quite the adjustment - in a good way - to have all this help. I had been wracking my brain trying to figure out how I can get to the Jr. High on 8/10 to register our son for 8th grade - now I don't have to worry. Someone will be here with daddy, and I can do what I need to do. BTW - how big of a PITA is it to have to register your child every year even when they don't have to change schools? Patrick will be attending the same school as last year...but I must take birth certificate, shots records...all that stuff, and re-register him. Ugh.

So far, all three of the professionals from Hospice that I have met are incredible. The RN assured me FOUR TIMES that it's not the medication causing this. Why four times? Because I kept asking. I feel strongly that this quick downturn is somehow my fault. And now, with him not drinking or eating - I should be able to find SOME way to get some nutrition into him. Of course, the nurse told me in no uncertain terms that it's NOT my fault, but it sure feels that way, seeing as how he is and has been in my care for 4 1/2 years.

The whole situation is miserable. But I think these wonderful people from hospice will be just the Godsend I need. Not only to care for daddy - I find that I need care, too. Someone to answer my questions. Someone to reassure me. Someone to hold MY hand as well as daddy's.

Next week, I will meet the social worker and the chaplain. It's going to be busy around here.

I love that man (daddy) so much. I hope he knows that. I will lspend the last weeks making sure he does.

...lil' deb

 
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Old 08-01-2009, 05:27 PM   #2
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Re: Hospice visits

That's how I felt when Hospice helped us too. And, like you say, they are right to the point in telling you what is to come. I appreciated that!

I remember trying to get my FIL to watch his regular, favorite soap opera...he had watched it from its inception, but nope, he wasn't interested. I tried to get him to watch something else...nope. It wasn't til Hospice showed up and explained to us that the body begins leaving this earth before it dies. TV? nah, not gonna need it where I'm going. Food, water? What's the point? The body knows.

And the same thing with my step dad. They too came with the special medicines to keep him comfortable. And shortly after he died they flushed them down the toilet. Goodbye.

After he died, they were so gentle and calm around us. They held our hands. They gently led my mom in to see him..to kiss him, to hold his hand. They were a blessing...truly doing God's work. They sat with us while we waited for the funeral home to come. ANd when they did come, they stood in the room as he was gently wrapped in velvet cloth and taken away. I watched the whole time. I felt it was my responsibility to go through it with him. To watch over him. Me and his grandson. They treated his body as though it were made of gold. The whole time Hospice asking if I was okay to continue. Then after he was taken away, the chaplain came right over. Sat with us. Talked to us. Prayed with us. They made it bearable.

I am so glad you have their help now. You have done a wonderful job caring for him..you are a daughter to be proud of, that's for sure.

You hope he knows you love him??? He knows. We know.

Love, Meg

 
Old 08-02-2009, 03:12 AM   #3
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Re: Hospice visits

Deb, one of the things that I've learned here is that we can't FIX it. Nor can we UNFIX it! There is nothing we can do to help or hinder the progression of this unpredictable disease. We like to think we can. We keep trying to. We keep looking for signs that we have succeeded. But we only HANDLE it. Maybe it was because your dad knew he was in a safe and loving place, in safe and loving hands, that his body has decided that it's okay to finally let go now. I don't know. But it's clear that you have taken the best care of him that a human can. We all see that, and I'm sure your husband and son see that. I hope they'll tell you that!

The nurses know what they're talking about. Please, please, just rest in their care and try to stop blaming yourself. They're experienced, compassionate people. They do this because it's their nature. It takes a very special person to work hospice. I know a few, and their hearts are gold! Go ahead and ask a dozen more times if you need to, but they're going to keep telling you that you've cared well for him and that you didn't cause this.

Let them do as much of the work as possible. This is a time for you to gather your strength together again. You need to rest, not just physically. Let them minister to you as well as to your daddy. I'm so glad you have angels there, someone finally taking care of DEB! Keep loving him! He knows you do!

Hugs,
Emily

 
Old 08-02-2009, 08:15 AM   #4
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Re: Hospice visits

I love the wisdom and compassion both posters have written to you! Everything they say is so true.

I think part of us becomes accustomed (?) to the challenges Alzheimer's brings into our lives and when this final stage comes...we have a little trouble actually accepting it. Deb...it does seem your Father dropped into this rather quickly...but that in itself, may be a blessing.

My comments mirror what has already been said...you have done such an admirable job with what you were able to do. I remember some of your first posts where you weren't sure it was "O.K." to say something funny about his actions...you passed that test and realized that much of our dealing with Alzheimer's means we HAVE to be able to see the flickering parts of humor that lie before us once in a while...we have to not feel guilty when a giggle sneaks out!

I'm visiting my sister in AZ...almost a week now...and we've shared "Mom" stories with tears and laughter. She was not able to come home for Mom's funeral...just me and the 4 brothers...so it's so good to be able to talk with her.

Hospice is such a fine group of loving people! Don't be shy about asking questions...they were a Godsend with us! Thoughts remain with you today.....Pam

 
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