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Old 07-29-2013, 07:35 AM   #1
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Vascular Dementia - hospice and NH

This is my first post. My 90 yr old mom is now in a NH where she was admitted after a hospital stay in May for an UTI. She originally went into the rehab portion of the NH as we felt she could get a bit stronger and go home with 24/7 care but no chance of that now as medically fragile as she currently is. Before she went to the hospital, she had trouble feeding herself since she has inherited familial tremor (since she was 12) and it had gotten much worse. She has had several TIA's and her CT scan is not encouraging. She has lots of other medical issues like CHF and diabetes. She is wheelchair and reclining chair bound and they are using a lift to transfer her. She needs two people to move her. She has started refusing her pureed diet (some choking issues) and most food/liquids. I can get her to drink small amounts of liquid but not much (8-12 ozs max). Her skin is breaking down and tears dreadfully. That has been going on for a while.
She recognizes me and my brother and calls us by name and can be lucid for a while but mostly we can't understand what she is saying as she has fairly severe aphasia. She knows some family members but can't call their names.
The NH has put her on comfort care with our consent. She didn't have an advance directive but my brother and I have POA and Medical POA. I know the next few weeks are going to be tough and I wonder if hospice would be an asset in the NH. The NH is a really nice place but was a bit discouraging about it and said it really wouldn't add anything to what they were already doing. She is about to come off the skilled care that she entered in with for rehab so we are private pay. We had hospice for my MIL and my FIL but they were at home. Would hospice be any advantage in the NH environment? There doesn't seem to be any consensus on what the best route is and I want to make sure she gets the best attention and care possible.
This is hard.

 
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Old 07-29-2013, 08:08 AM   #2
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Re: Vascular Dementia - hospice and NH

I think Hospice would be an advantage for these reasons-they pay for any medical equipment she might need in addition to what she has now, plus they pay for her pain meds and possibly maintenance meds. They also provide a lot of support to family members through the process and spend time with you helping you to understand what to expect, etc. It doesn't hurt to get an evaluation done, find out all the details, then decide. An evaluation doesn't commit you, as you can decide after you find out how it would work in conjunction with the NH. I am sorry you are going thru this with your Mom. So glad she still recognizes you and has lucid times. I'm sure others will advise as well, and glad you found this board during such a difficult time.

 
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Old 07-29-2013, 01:07 PM   #3
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Re: Vascular Dementia - hospice and NH

Cathy, I am with Ladybug in thinking it would be a great asset to you and your Mom at this time. Yes, Hospice will pick up the tab for many supplies, equipment, and medication. These are actually 100% paid through Medicare with Hospice involvement! Beyond that they have a team of professionals including doctors, nurses, care aids, volunteers, social workers, and more to help you and your Mom.... all 100% paid for by Medicare through Hospice! The support they have for you is priceless. They can answer the question you have and are there for you.

I used Hospice in a facility setting for both my Dad and then my Mom. My only mistake was waiting too long to call them in with my Dad. They were only with him for 2 months. Mom was with Hospice for almost 2 years. I can not sing their praises loud enough. When there was a situation/crisis with Mom they were called first. They made the assessment and guided me through whatever decisions had to be made. I had two teams, the facility and Hospice, watching out for Mom... and Hospice watching out for me! Please ask for a Hospice referral, have an assessment done by them, and talk to them. That way you can make an educated decision. I think you will be pleasantly surprised how much they can do to help you and your Mom

Love, Deb

 
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Old 07-29-2013, 01:27 PM   #4
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Re: Vascular Dementia - hospice and NH

You should ask for hospice and find out what they can do for you. NH may have different advice for you but you have a right to look into it. Sometimes NH probably waits until last minute to tell you to get hospice because they think they can cover all the bases. However, hospice is another service from outside so it is up to you to explore it. Hospice should help you much more.
My late FIL never got hospice as the NH didn't recommend it because they had another ward for sicker patient to move to. However the hospice is useful for late stage and you can always re-apply for hospice after 6 months. It does not have to be only 6 months before death as no one can predict it anyway.

Hugs,
Nina

 
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Old 07-29-2013, 03:09 PM   #5
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Re: Vascular Dementia - hospice and NH

My husband had vascular dementia and is in hospice now because of a massive stroke. I can't say enough good about the hospice team. They are incredibly supportive. My stepson and daughter in law want to take him out of hospice and into rehab because he has regained some swallowing ability (although no interest in nutritional supplements). The physical therapist said he had "some rehab potential" to sit up and for his right arm (which supposedly not affected by stroke) to feed himself. But he was looking at skilled nursing care for the rest of his life, unable to dress, toilet or bathe. Plus he has a 50% chance of another stroke, even with medication, in the next three years. It's very hard watching someone grow thinner and thinner every day. I wish we lived in Oregon.

 
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Old 08-09-2013, 12:28 PM   #6
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Re: Vascular Dementia - hospice and NH

My husband died in hospice two days ago three weeks after a massive stroke. I hope that the literature is correct and that this was a relatively painless death. It was excruciatingly painful to watch him dwindle down to skin and bones. He had already lost around 90 lbs because of surgery for a swallowing disorder six years ago. At first I was encouraged when he started to swallow a few liquids in hospice--he asked for a beer, God bless him! But he couldn't consume enough on his own to survive, and he wasn't interested in the nutritional supplements. I felt so bad about how mean I had been to him over the last 6-7 years as each little mini-stroke took a part of what he used to be. Yet his essential core, a kind and gentle man, never changed. One of the MDs had suggested he had alcohol related dementia, so I was blaming him for a long time and made him cut down to one drink a day. But I was glad to give him the beer in hospice. It didn't matter at that point. The last years were tough, but the years before were really wonderful, and I wish I could have concentrated more on those instead of complaining because he couldn't play bridge or fix breakfast anymore. I shall miss him for the rest of my life.

 
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Old 08-09-2013, 08:36 PM   #7
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Re: Vascular Dementia - hospice and NH

Arleeda,

I am so sorry that your husband passed away. May he rest in peace.
This way he won't suffer any more disabilities and pain. The last year is always the toughest and most unpredictable. Please accept my condolences.

Hugs,
Nina

Last edited by ninamarc; 08-09-2013 at 08:37 PM.

 
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Old 08-09-2013, 09:13 PM   #8
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Re: Vascular Dementia - hospice and NH

Arleeda, I am so very sorry for you loss. Please understand that we do what we know in the moment... we do the best we know. Then when we know different we do different. Please do not carry guilt or regrets with you from here. Hindsight is a very different perspective than we had in the moment. It is all part of this journey we are on. He is now free and so are you. It will take you time to grieve and to find your new normal but that will come. At this time you need to take care of yourself, celebrate the wonderful years, and let the rest go. Also know that the literature is correct. The dying process is worse for us than for our loved ones because we are the ones with awareness of the process and the loss. Know that Hospice kept him comfortable in his last days... and that is all we can ask. My wish for you is for the strength and courage,comfort and peace that you need now.

Love, deb

 
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