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 How has a move back home worked for you? 
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Joined: Mon Nov 25, 2013 7:33 pm
Posts: 43
Location: Pennsylvania
Post Re: How has a move back home worked for you?
This move back home with hospice was definitely the right decision for us. A sense of calm came over Mom the minute we rolled in the door. The 24 hour live in aide is a bit more than one third the cost the LTC facility would have been for us and the one to one care is superior. Meeting physical care needs is immediate and comfort meds can be given on the spot to manage pain and anxiety. The hospice staff visits and support are wonderful.

Seroquel was definitely the key to the change in behavior (improvement) making the short term placement in the SNF manageable. Even though the SNF assured us they could manage LBD, it was clear they were not used to the fluctuations in cognitive and motor abilities day to day and were viewing Mom as their other Alzheimers patients. No one knows this ride as we caregivers do.

I wish we had done this and had the Seroquel on board much sooner. Mom is mostly bed ridden now and comfort is the main priority. We are here accompanying Mom in this final stage of her journey and will see her home.

This forum has been amazing for me to find wise knowledge and advice and it has been most appreciated.

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Marian, daughter of mom [82] diagnosed with LBD November 2013 after 7 years of a textbook course of this disease. Passed on January 26, 2014 following a week of home hospice care.


Wed Jan 22, 2014 2:05 pm
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Joined: Mon Nov 25, 2013 7:33 pm
Posts: 43
Location: Pennsylvania
Post Re: How has a move back home worked for you?
This was a good decision for us. Mom's journey with LBD has ended.

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Marian, daughter of mom [82] diagnosed with LBD November 2013 after 7 years of a textbook course of this disease. Passed on January 26, 2014 following a week of home hospice care.


Mon Jan 27, 2014 12:25 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: How has a move back home worked for you?
You and your family are in my prayers. God bless you. Glad she was able to be home, as was my husband, for the final stretch.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Jan 27, 2014 12:49 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3369
Location: Vermont
Post Re: How has a move back home worked for you?
My condolences. She is no longer suffering from this terrible disease. Focus on the good times to help you get through the grieving process - happy memories can be a comfort. Take care, Lynn

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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.


Mon Jan 27, 2014 12:52 pm
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Joined: Mon Jan 27, 2014 11:05 pm
Posts: 12
Post Re: How has a move back home worked for you?
Marion, so sorry for your lose. Glad you had your mom home with you. Your whole post and the responses have meant a lot to me as I struggle with the decision to move. I will do whatever it takes to keep us here in our home until my husband needs to go into a facility. I am afraid if we move now I will lose a part of him and with your posts and everyone else s it seems staying here would be best for him.
God bless you and your family
Mary


Fri Jan 31, 2014 5:38 pm
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Joined: Mon Nov 25, 2013 7:33 pm
Posts: 43
Location: Pennsylvania
Post Re: How has a move back home worked for you?
Mary....It such a personal decision and there is no one right answer. Just take time to evaluate all of your options so you can make the best decision for you and your loved one.

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Marian, daughter of mom [82] diagnosed with LBD November 2013 after 7 years of a textbook course of this disease. Passed on January 26, 2014 following a week of home hospice care.


Fri Jan 31, 2014 6:16 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: How has a move back home worked for you?
so sorry for your loss... glad that you were able to do what worked best for you and your mom...((()))
cindi

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sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Sat Feb 01, 2014 8:07 pm
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Joined: Mon Nov 25, 2013 7:33 pm
Posts: 43
Location: Pennsylvania
Post Re: How has a move back home worked for you?
Thank-you for all of your kind thoughts and words.

_________________
Marian, daughter of mom [82] diagnosed with LBD November 2013 after 7 years of a textbook course of this disease. Passed on January 26, 2014 following a week of home hospice care.


Sat Feb 01, 2014 8:42 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 261
Post Re: How has a move back home worked for you?
Marian, I'm sorry to hear of your Mom's passing. Keep your good memories close and she'll always be with you. gail

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Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Thu Feb 06, 2014 12:30 pm
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Joined: Wed Nov 13, 2013 3:04 pm
Posts: 44
Post Re: How has a move back home worked for you?
Thanks, everyone. There are no easy answers or perhaps NO answers. Mom is on Seroquel...can't imagine how bad her life would be without it. It does seem to agitate her, or it's the progression of the disease. Yesterday and today she had horrific psychotic episodes. So bad that my Tuesday caregiver quit and threw in the towel. I am in between a rock and a hard place. I can't have her in a private home setting, because she frequently needs more than one person to assist. So, we are paying $5, 825 a month for an ALF, and $10-17/hour for a 24 hour sitter. Not only are they requiring it, but she totally derails if someone is not with her at ALL times. Thank God, Dad was frugal, but at the rate we are going......

Well, it's interesting that your LO required hospitalization for control of symptoms. I have called 911 a few times and by the time she gets to the hospital, she normalizes.

I am about to have a nervous breakdown, Either the facility or the sitter are constantly calling and texting with her out of control behavior. She is under the care of Behavioral Health at Wake Forest Baptist....she was doing pretty good on the med changes (Seroquel increase) but now she is out of control AGAIN. No UTI. Can't take much more. She is on Seroquel 100 mg at night and 25 at 5:00 p.m. Also scheduled Xanax.....cries screams, you name it...2 very bad days in a row


Wed Mar 12, 2014 10:46 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: How has a move back home worked for you?
I wish I could help. I felt so much helplessness, hopelessness and despair over my husband's behavioral issues. Do take good care of yourself. It sounds to me as if she may need a different type of facility.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Wed Mar 12, 2014 11:06 pm
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Joined: Mon Nov 25, 2013 7:33 pm
Posts: 43
Location: Pennsylvania
Post Re: How has a move back home worked for you?
I am sorry for you, denshaw. My mom was on morning, afternoon and evening doses of Seroquel with some additional as needed options based on behavior. There was also some depakote on board. This seemed to work better than Xanax had. I hope you find some improvement in your current situation.

_________________
Marian, daughter of mom [82] diagnosed with LBD November 2013 after 7 years of a textbook course of this disease. Passed on January 26, 2014 following a week of home hospice care.


Fri Mar 14, 2014 4:57 pm
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Joined: Wed Nov 13, 2013 3:04 pm
Posts: 44
Post Re: How has a move back home worked for you?
One thing I have noticed about all facilities, the care is delayed. Naturally, it is not a 1:1 ratio. My mother is very impatient. HOW FORTUNATE you all are that a facility has even AGREED to take your LO. We are being turned down EVERYWHERE. It is not the finances. Dad left her comfortable. My mother is also gluten intolerant which is ANOTHER reason she has been rejected. I am between a rock and a hard place. We could move her into an apartment, but we would HAVE to have a lift as she is a two person assist. I have no idea what all is involved with a lift and if I could trust her caregivers to operate it safely.

Currently, her behaviors are NOT under control....she is like a mad person...even attempting suicide with the call bell cord. She is in the hospital and not even the geriatric psych dr can come up with a solution.


Mon Jul 14, 2014 11:43 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3369
Location: Vermont
Post Re: How has a move back home worked for you?
Several people I know who were exhibiting this sort of behavior had to be sedated and remain in the hospital. These are different people in different states, so it's not like just one facility didn't know what to do other than sedation.

If the drs. are willing to keep trying alternative medications and there are still options available, I'd say go for it, but remind them to go slowly, i.e., don't give her a large dose and up it slowly if it is showing any positive results. Worse comes to worse, she may be facing sedation too, but let's hope it doesn't come to that. I think that is uncommon, but like I said, I do know several people who had no other choice because no meds could calm them.

The one who lives closest to me to whom this happened 2 years ago was in a very high end dementia facility and those folks could deal with almost anything, but not my friend's dad because he became so violent and totally out of control. He'd get back to the facility for a short time then be taken back to the hospital in an ambulance and sedated. Then the cycle would repeat. I hope this is not what happens to your mom but it is a remote possibility. Good luck, I hope something works and SOON!!! 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.


Mon Jul 14, 2014 5:14 pm
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