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 How has a move back home worked for you? 
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Joined: Fri Jul 26, 2013 4:29 pm
Posts: 15
Post How has a move back home worked for you?
My 91 year old mom has been in a Skilled Nursing Facility that specializes in memory care for about 10 weeks now. Even though she really likes several of the care givers, her delusions, hallucinations, fear and confusion are all getting worse. We are considering bringing her back home with some home nursing aide help in order to reduce her delusions and fear. But she sometimes thinks my house is a fake replica and even becomes fearful at home. Has anyone brought their LO back home from a SNF? If yes, did the move help or make things worse? Thank you for sharing your experience with this.


Wed Jul 31, 2013 2:57 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: How has a move back home worked for you?
Hi - transitions seem to really throw our LOs for a loop and her condition is only going to deteriorate further, so I'd think very carefully before moving her again, particularly back home. Most of our LOs cannot afford the level of care at home, especially as their care needs increase to 2 - 3 person assist level. Even 5 hours of at home care a day before my dad became totally unable to care for himself was costing $3,000 per month out of pocket, and within a few weeks he needed 24/7 care and then eventually needed more than 1 CG many times a day. Most CGs or CG agencies charge at least $20/hr., so multiply that times the no. of hr. x 30 days per month and it is unaffordable to most people.

Moving our LOs to ALFs or SNFs is difficult enough, so I'm guessing you all thought very carefully before moving her to the SNF to begin with. If her needs were such 10 weeks ago that this was a good idea, then it is probably still a good idea for her to be at the SNF. Based on the experiences of many others on the forum and people I personally know, hallucinations, delusions, etc. come and go hourly and daily, but never get better in the long run. If she already in confused about where "home" is, moving her "home" doesn't seem like it's going to do anything positive for any of you.

It's hard to see our LOs have to move out of their homes, but at some point it becomes necessary for a lot of people. I'm wondering if maybe family members are feeling guilty about the move to the SNF and if that might be what's causing you to question whether it was the right thing. Only you all will know the answer to that. Good luck, hang in there, it's tough. BTDT 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.


Fri Aug 02, 2013 10:06 pm
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Joined: Fri Jul 26, 2013 4:29 pm
Posts: 15
Post Re: How has a move back home worked for you?
Thank you, LTCVT. I think you are correct. I do feel guilty about placing her in a SNF. She does not like the place, but likes many of the staff. Her doctors recommend the SNF. Her symptoms are getting worse so any move back home may be temporary. It is hard to know the best course with such a difficult disease. She is also confused about what is home and does not always think my home is home anymore at times.


Sat Aug 03, 2013 7:39 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: How has a move back home worked for you?
I agree with Lynn. The more moves, the worse the declines, as a rule

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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.


Sat Aug 03, 2013 8:52 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: How has a move back home worked for you?
Certainly none of our LOs aspired to live in SNFs, right? And most of us never wanted to place our LOs in an ALF or SNF, but there comes a time when we simply cannot provide the level of care our LOs need. There is a reason many CGs die before the person they are caring for - it is physically very difficult and emotionally draining. Particularly when our LOs start losing the ability to understand where they are and the definition of "home" can vary moment to moment anyway, I'd want to keep the person where they are.

When my dad moved into the ALF, he obviously missed his home of almost 60 years, and he would rather have been there, but he also knew he absolutely could not take care of himself. I had to explain the money situation to him - $15,000 a month to stay at home or $4,500 a month to not only have CGs, but nurses, all of his meals, laundry and maid service, etc. And that was when he was only a 1-person assist. After a few months he started referring to his room at the ALF as "home" and once in a while "home" also meant the town he lived in until he was 16. Sometimes it meant our family home of 60 years.

I'm going to guess that your LO will start feeling more comfortable where she is and will come to recognize it as "home". I know how painful this is, and I know how guilty most of us CGs can feel. Please don't beat yourself up for moving her to where she is getting the level of care she now needs. If she actually likes some of her aids at the SNF, that is half the battle won already! Take care of you too, 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 Aug 04, 2013 8:31 am
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Re: How has a move back home worked for you?
I agree with those who have pointed out problems with transitions. My mother (almost 97) was in assisted living with my dad (97) and moved about 120 meters away to a dementia care unit (locked). At first she felt like she was in a sort of prison, but she has decided her room is home. I have taken her back to apartment a few times in a wheelchair but the back-and-forth seems pretty stressful for her. She likes the staff, and the other dozen or so residents are really kind and sweet to her and to each other, and she views them as her friends. I go every day and feed her dinner and spend time with her, and my dad trundles over every day on his walker. But neither he nor my husband and I could provide the 24/7 care that she needs, and is getting.

I think it was actually harder on my dad than on my mom. She has a relatively easy-going nature, and while she misses him, she has always tried to make the best of whatever life handed her. This trait has persisted. My dad, though, feels lonely, guilty, burned out, and anxious. Sigh.
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Wed Aug 07, 2013 4:46 pm
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Joined: Mon Nov 25, 2013 7:33 pm
Posts: 47
Location: Pennsylvania
Post Re: How has a move back home worked for you?
My 84 year old Mom who is about 5 years with probable LBD had a hospitalization one month ago. Significant medication adjustments occurred and she then went to a SNF for Medicare covered skilled services. She is much improved with respect to even mood, decreased hallucinations and sleeping through the night for the past 30 + days.
Her functional abilities fluctuate widely, within 72 hours, from only being able to accomplish bed to chair transfers, with assist of 2, to being able to walk 160 feet with one person walking along beside her holding her arm. Physical therapy has already floated the idea of discontinuing PT due to lack of progress. I responded with clarification of the Medicare law, considering Jimmo vs. Sebelius and they agreed to continue therapy for now. She is in a highly rated facility and the care is OK, but my Dad is at her side for eight hours a day and I am there every evening for 2-3 hours doing evening care and getting her into bed. The reality of staffing levels in skilled facilities is that personal care needs are often times delayed and my Dad is concerned about her needs being met if he is not there at her side. My Mom can not express her needs or use a call bell to request assistance. At this point, we are considering bringing Mom home with 24/7 live in aide care. We plan to secure a hospital bed, wheel chair and stand assist lift device. We feel there will better personal care and more of a "normal" life ( if that makes any sense.). Having read this thread, I am wondering if our thoughts are misguided????? The cost factor will seem to be less with the home scenario by our calculations.
Has anyone had a similar circumstance and had success with a move back home? She is currently on a low dose of seroquel and depakote, so there is room for upward adjustments as behavioral issues rear their ugly heads again? I would value some input/thoughts on my ramble.

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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.


Sun Dec 29, 2013 12:28 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?
If you are able to care for her at home, it is probably the best solution.

_________________
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.


Sun Dec 29, 2013 1:32 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: How has a move back home worked for you?
As the patient, I'd probably want to be in my own home. As a family member and CG, I know that this isn't always possible for several reasons.
1. Financially, paying at least $20 per hour for live in care would have cost my dad about $14,000 - $15,000 a month, and that was when he was a 1-person assist. When the person becomes a 2 - 3 person assist, you can see how expensive it would be, unless there is a person in the home who is physically able to lift or help lift your LO 24/7. A typical ALF is around $5,000 a month, a typical SNF is around $10,000 a month. The math shows that live in care is more expensive.
2. If the CG isn't getting any sleep because of the LO being up all night, having nightmares, hallucinations, etc. then the CG's health can start to deteriorate.
It is not an easy decision or one made without a lot of balancing of various people's needs, and then most of us have some amount of guilt and angst over this decision as well. Good luck figuring out what will work best for your family - it's not easy. 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 Dec 29, 2013 3:02 pm
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Joined: Mon Nov 25, 2013 7:33 pm
Posts: 47
Location: Pennsylvania
Post Re: How has a move back home worked for you?
Mom was approved for hospice care. She has declined very rapidly in the past 2 months. We are moving her back home with 24/7 live in certified nursing assistant care.
Hospital bed, alternating pressure mattress, wheelchair, and lift device all being delivered tomorrow and transport home is Monday morning.
This is going to be more cost effective, but that is not the determining factor for me or my dad. We are hoping for more personal and timely meeting of her needs and keeping our promise to Mom. I can't be sure this is the right decision, but it feels right now. I have some trepidation, but onward we go with this horrific journey. Will keep up posting on how it goes.

_________________
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 17, 2014 3:18 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?
Sounds like the right decision to me. I brought my husband home on Hospice in his final days after a hospitalization. Hospice was wonderful and I was very glad to have him home with me. You are in my prayers.

_________________
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.


Fri Jan 17, 2014 3:42 pm
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Joined: Sat May 25, 2013 3:53 pm
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Post Re: How has a move back home worked for you?
I think you have to go with what feels right - after you've thought it through of course and it sounds like you have thought it through. Less travel is always a bonus for the caregiver as well. Enjoy your time together.

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


Sun Jan 19, 2014 5:01 pm
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Joined: Wed Nov 13, 2013 3:04 pm
Posts: 45
Post Re: How has a move back home worked for you?
I was struggling with the thought of moving my mother to an apartment with 24 hour care. At that time she was a one-person assist. Lo and behold, a few weeks later she became a 2-3 person assist. Uggh. So that is not an option. Her ALF is requiring us to hire 24 hour care, on top of the monthly fee. $$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$

I am feeling guilty for not having her in my home with hired help. But the extra bedroom is now occupied by my daughter who moved back home.

Decisions....decisions. Even at SNF, my mom will raise cain. She has to have someone with her literally 24 or she derails....now she is derailing even with a person there. Desperate for answers and relief on this horrific journey.


Tue Jan 21, 2014 5:45 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?
The answer is medication. Without Seroquel, my husband would not have been allowed in any facility. Most assisted living facilities are simply not equipped to handle LBD. Skilled nursing facilities have more staff. Dementia care units [or 'memory care units'] are usually OK unless there is physical disability but many require a move to a SNF [especially if it is a 'tiered' facility] if the resident is unable to walk or use the toilet. SNFs will usually take Medicaid, too, when one's resources run out. Hiring someone 24/7 to take care of someone in a facility seems ludicrous. Why not just hire someone in the home? What I found was that 24/7 home care would be even more expensive than a SNF so a SNF was our only option.

_________________
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.


Tue Jan 21, 2014 6:17 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: How has a move back home worked for you?
I have heard of SNFs asking families to pay for 24/7 care in addition to what they provide too. I think that's insane. A friend who's MIL died of PSP, and was really not that bad off compared to many other people I've known in ALFs and SNFs, was the one who "required" extra care. My friend pushed them to give her MIL more care without the family having to pay even more money. They were already paying about $7,000 a month out of pocket for her care, and then to pay for another person? I don't know how a place can justify that.

Another friend whose dad had LBD was in the best dementia care facility in this state, and it was costing about $10,000 a month out of pocket. Her dad had such horrible psychotic episodes that he was having to be hospitalized about once a week and be completely knocked out from meds because he was so out of control that even in this very skilled facility, his behavior could not be controlled. He was a danger to himself and others. Luckily after about a month of in and out of the hospital he took a huge turn for the worse physically as well and died within days of being put on hospice. I guess for some people there is no good answer in terms of meds and other treatments. It is a terrible, terrible disease.

Peace to all, 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.


Wed Jan 22, 2014 12:26 pm
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