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 New member from Boston 
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Joined: Fri Jan 13, 2012 11:51 am
Posts: 43
Post New member from Boston
I've been reading your forums for a while..and I guess it's time for me to introduce myself and tell my mom's story.

My mom, is 82 and recieved a probable LBD diagnosis in July of 2009. She was diagnosed and treated for ALZ for 12 years before that. She has been on a steady decline for the past year, and we fear her journey is ending.

For some background information, she was a geriatric nurse at a very high level rehab/snf near my parent's home for 20 years before her retirement. She had just suspected early ALZ when she retired....and told us all..."Don't ever let me come back here!" She knew better than the rest of us what lied ahead of her. The house that she shares with my dad was her childhood home, and told us on every occasion possible that she was born there, and that's where she wants to pass.

She has been on a quicker decline the past 6 months, and upon the advice of her primary MD, we began hospice evaluations last week. She even fell during the evaluation (I was in the kitchen going over meds with the nurse). 3 days later, she fell out of bed during the night and fractured her hip. Since she was not yet formally on hospice service, the ambulance was called, and she had a partial hip replacement 4 hours later. She is now in a rehab facility for the hip, but they are concerned she may not be cognitant enough to fully participate in rehab. Before the fall, she was dually incontinent, could walk only 20 steps with a walker before "tiring". She can feed herself soft foods, and my dad helps her dress every day. He is the only person she consistantly recognizes. While she is passively happy (she was always high strung!) I see the toll it is taking on my dad, both physically and emotionally. He is adamant about fulfilling her final wishes. Hopefully her rehab stay will allow him a bit of time to recoup and prepare himself for the battle ahead...if she is able to return home.

My brother and I are trying to help him as much as we can, but we both have younger children of our own that require constant care (ages range from 6-14).

I take comfort in reading all of your stories, and I hope someone else can achieve some comfort from mine, knowing you are not alone


Sat May 05, 2012 11:12 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: New member from Boston
I'm sorry to know about your mother's situation.

I only know of one person in eight years of coordinating a local support group who fell, broke his hip, and the family did not proceed with hip replacement. He died a few days after being discharged from the hospital. He was in a SNF on hospice care. The pain was incredible for the first day or two, until they figured out how much morphine was needed. After that, his days were peaceful and his passing was one of the more glorious I've heard about -- with harp music and reaching for something before he slumped back and died. Despite the fact that family members around him were making all kinds of decisions, it seemed this gentleman was still very much in control.

I hope your mother's wish of dying at home can be fulfilled. I suspect she's still very much in control.


Sun May 06, 2012 12:15 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3125
Location: Vermont
Post Re: New member from Boston
Welcome and so sorry for your family's situation. Please encourage your dad to build his strength and get respite from caregiving. Too often CGs own health becomes so compromised that they end up with either lifetime conditions they can't overcome or die before the person they are caring for does. Remind your dad that it won't do him or your mom any good if he becomes ill because of the stress of CGing. It's really, really, hard, especially when you have young children, are working full time, etc. If your mom is able to come home after rehab I hope someone is arranging for CGs to come in and help your dad to allow him to get out of the house for his own physical and mental health. Come back as often as you need to for support. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sun May 06, 2012 8:00 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New member from Boston
I am glad you decided to step out and join other members here, I am sorry for the recent events for you Mom and I am sure this is all taking a toll on your Dad, I can't imagine not having the hip repaired, sadly she might not do well with the rehab and if she doesn't , they probably will ant to either discharge her to her home or a nursing home. I believe medicare will only pay if the patient improves and does the rehab part of it !

Good Luck !

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Irene Selak


Sun May 06, 2012 10:21 pm
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Joined: Fri Jan 13, 2012 11:51 am
Posts: 43
Post Re: New member from Boston
Thank You All for your support!
Irene, you are correct..medicare/medigap will only pay up to 30 days as long as she is making progress. Their therapy goals are to walk 30 feet with a walker, do 1 flight of stairs, and dress/toilet all with 1 person assist. She is making progress,but tires very quickly. They are breaking down her therapy into shorter sessions several times during the day so she has the strength.

I do feel a a bit better after talking to her primary MD, as he agreed the hip had to be replaced. He said it was too early for the morphine level it would require to make her comfortable, and she came thru the surgery better than expected.


Mon May 07, 2012 6:47 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: New member from Boston
I hope your mom can participate in the rehab, and see some improvement.


Mon May 07, 2012 10:23 pm
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Joined: Fri Jan 13, 2012 11:51 am
Posts: 43
Post Re: New member from Boston
Thank you all for your information and encouragement.

Mom is making progress in therapy...a little bit each day. The occupational therapy is really coming along. Things that my dad was doing for her before her fall, she can do herself with prompting (socks and shoes is the big one!) My dad is getting some much needed rest, even though he still spends 4-6 hours a day with her at the rehab facility. She lights up when he is around.

One of our indicators that she was declining was her weight loss and loss of appetite. While she did not want a feeding tube, they have added pro-cal shakes to her diet,and she seems to like them, and managed to gain 1/2 pound. She had lost 6 pound is 6 weeks prior to that, and about 15 in the last year.

Maybe she has more time than we thought?


Fri May 11, 2012 8:01 am
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Joined: Tue Aug 30, 2011 1:36 pm
Posts: 48
Post Re: New member from Boston
Hi and welcome.
Glad your mom is doing better. It's a roller coaster ride for sure. Sorry you have to be here, but glad you're reaching out.

_________________
Donna G, 52, helped Dad take care of Mom, who died at home surrounded by family in June 2012.


Fri May 11, 2012 5:40 pm
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