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Old 11-20-2008, 12:55 PM   #1
Join Date: Jul 2007
Location: NJ
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jnnt29 HB User
Looking for advice

I just found these boards, and wish I had found them a while ago. I'm looking for some ideas/advice from those of you who have gone through the same thing. My dad is 90 with dementia, and has been in a wonderful nursing home since August. Two weeks ago, he fell and broke his hip, and has been in the hospital ever since. He is basically being neglected and not cared for. The plan is to have him transferred back to the nursing home today.

Since the surgery to fix his hip, he lost the ability to swallow. The hospital attributes it to the dementia. He had a pic line put in this afternoon. Here's the dilemma - he's very restless, he keeps trying to get up out of the bed (he can't walk due to the surgery and weakness), he constantly takes his nightshirt off, and he started to pick at his pic line within 5 minutes of it being inserted. They had the line covered with a sleeve which he just pulled right off. What do they do with patients like this? He can't be watched 24/7 when he's in the nursing home. We were told that it's against state law to restrain him. They're only allowed to put "mittens" on him if he's considered a hazard to himself, but he'd probably pull those off too. We asked to have him mildly sedated. What else can we do? We're concerned that if he pulls out that pic line in the middle of the night, he'll bleed to death. Has anyone else dealt with a situation like this?

As far as his state of mind, he's definitely declined since the surgery last week. Last night was the first time that he didn't recognize a family member, my brother. Today he's better, asking very relevant questions and making complete sense. He's just so weak from not eating for a week, that he's speaking in a whisper.

Thanks for listening. This is such an awful, draining disease. I wish no one had to deal with it.


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Old 11-20-2008, 04:12 PM   #2
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Re: Looking for advice

Hi Nancy,
Welcome to the board......sorry that you need to be here, but since you are, you'll find no better place for support. I am here in support of my grandma, I'm not a "hands on" caregiver, just a "love from the bottom of my heart" granddaughter. There are lots of lovely people here who I'm sure will jump in with all sorts of advice.....
So in the meantime, Welcome, welcome, welcome!!!

Love, Caroline xo

Old 11-20-2008, 09:29 PM   #3
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Re: Looking for advice

Welcome to the board. I hate you have to be here but glad you found us. I was like you when I found the board.... very thanksful but wish I had found it sooner!!

The accelleration of the dementia is probably a result of the anesthesia and the hospital stay itself. He may or may not come back to his past level of cognitive abilities.... most likely won't.

Why did they put in a pic line? Is it absolutely necessary or just for convenience? We had the same problem with Dad's IV the last time he was in the hospital. The second time he jerked it out, with major bleeding because of his blood thinners, I inquired why it was there. It was only for hydration and he was drinking. So I refused to let them put it back in. He did fine without it.

You Dad has no clue what it is or why it is there. Even if you tell him not to mess with it he will forget the instructions and the next time he notices it he will be picking at it again. If he feels it, and it is unusual, he will not leave it alone. Hospital do not use restraints any more and those with coginitive impairments are masters at doing what they set their minds to doing.

Right now my dad has a 3 inch x 3 inch section of skin missing from his arm. It is his upper arm, in the back, above his elbow. It has a new skin patch on it, bandaged, and then an arm sleeve over it, covered by his shirt..... and he manages to start picking off the new skin patch regularly. It is just what they do.

So I would question the absolute necessity of the pic line and see if it could be removed. If not and it is where he can get to it then he does need sedating for the very reason you indicated. If he is being neglected and not cared for I would make some major noises. We had that situation a few years back. We were fortunate in that Dad's cardiologist was practicing at a different hospital. We contacted him and had Dad moved. I would definitely file a complaint with the administration... backed up with facts rather than emotions even if it is after the fact. They need to know what is going on in their hospital. I have done this several times. You are your Dad's advocate. You are there to be sure he is treated right so question and advocate for him.

Let us know what happens. I wish you good luck and will keep you and your Dad in my thoughts and prayers....

Love, deb

Old 11-21-2008, 10:32 AM   #4
Join Date: Jul 2007
Location: NJ
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jnnt29 HB User
Re: Looking for advice

Thank you Caroline and Deb for the warm welcome.

Deb, the reason for the pic line is for nutrients. He lost the ability to swallow a week ago, and they started nutrients through IV. His living will states no feeding tube, but the pic line is allowed. Since it is long term, the doctors felt the pic line made the most sense.

The hospital stay was a nightmare, but he is back in the nursing home where he gets excellent care. We would have moved him back sooner if the hospital hadn't told us that the home wouldn't accept him if he couldn't eat. We finally inquired at the home, and they said they have lots of patients like my dad, and of course they would take him back.

They are going to attempt to try to teach him to swallow again, starting with honey. I'm trying to be hopeful, but I'm also realistic. At this point, I feel it would be a miracle if he pulls through.

The nursing home staff was in shock when my dad arrived back last night. He's been one of their favorite residents. He won the costume contest on halloween. He was always talking to everyone there. They really treated him (and my whole family) like family. Now he's barely alive.

We're still wondering why he lost the ability to swallow. The doctors blame it on the dementia. Isn't that something that usually happens in the late stages of dementia? Would he still be talking to all of us, knowing all our names, talking about past and current events? He certainly doesn't seem like he's at the end stages to me.

My heart goes out to everyone here. Thanks for the support.


Old 11-21-2008, 03:27 PM   #5
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Re: Looking for advice

It ( loss of swallowing reflex) happened to my Mom in the last 6 months of her life, having had Dementia for at least 5 or 6 years, and in stage 6 plus. I never heard of it happening so suddenly. With her it was a gradual loss.

My mother also fell and broke her hip. She had surgery and was sent to a rehab home which also had an adjoining nursing hme. She was unable to learn to walk again, was transferred to the NH, and died there 2.5 years later.

Just after the hip surgery Mom was in horrible shape; we all thought she was dying. She had lost her coordination and could not even push her glasses up on her nose or find her eyes with a tissue to wipe them. This dramatically improved after they took her off oxycontin and some other pain killer. Her coordination improved and she was able to actually enjoy the activities at the NH despite being in a wheelchair, and make new friends, and feel happy about the courtyard, the birds, flowers, etc. Only towards the very end was she listless and unhappy, losing a lot of weight and telling us that she was ready to 'go home'; which she did just after last Christmas. She had reached her 99th birthday the October before she died.

Sorry this is happening to your dad.



Last edited by Martha H; 11-21-2008 at 03:35 PM. Reason: sp

Old 11-21-2008, 04:51 PM   #6
Join Date: Feb 2007
Location: Adrian, Mi. USA
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Re: Looking for advice

Hi Nancy...want to welcome you also!

One of the challenges of Alzheimer's is that it will accelorate very easily with any change in location, or health situations. So many here have talked about noticing huge behavior changes after a broken Mom also ended up in a hospital this way, then never returned home. Even a cold can bring quick changes.

So glad to hear he's back in familiar surroundings! Bless, bless, bless those caretakers for their gentle nudges to get him back on track. They are the experts in caring for your Dad...hope to hear how he is progressing.......Pam

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