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 Arranging for Respite Care 
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Arranging for Respite Care
I'm in the process of arranging for a week of respite care for my husband in a SNF so I can give my strained back a rest. The in-home assessment folks were here this afternoon asking questions and my husband thought he was being interviewed for a job! He told them he was 'pretty much an invalid now' and didn't think he could do much. He was much relieved when I explained that he wouldn't have to work but would instead have activities and a bunch of people to take care of him for a week. :P

However, I wake up in the middle of the night every night in a cold sweat thinking about what might happen to him while he's there and if I would be able to forgive myself if he got sick or had a bad decline because of it. Nan, I thank you for reassuring me that respite worked well for you and your husband and that there were no ill effects from it, as some have apparently experienced. Since I'm not going anywhere, I'll be visiting him every day. Hope it goes well. Actually, it's not yet confirmed--they have to have a conference about it first but it seems possible, even later this week.

He was in a dementia care facility summer before last but he was more mobile and less disoriented than he is now.

_________________
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 Dec 14, 2010 8:33 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3339
Location: Vermont
Post Re: Arranging for Respite Care
Pat - you so need a rest. I hope it all works out really well for both of you. That's funny that Derek thought he was having a job interview! And maybe you can visit him every other day, so you really do get a rest. I'm afraid if you are visiting all the time you won't get the mental break you need, you'll see things that aren't being done exactly like you'd do them, and then that will be upsetting. And, it may be better for him to get used to the folks there without you being around. Kind of like when we sent kids off to kindergarten or college - they learn to navigate better if we aren't there hovering??? When my dad first moved to the ALF he was always asking me when I was going to move him home. If Derek does that, you are not going to get the rest you so badly need, and it's only a week. Sorry to sound like a parent, but you know you need to 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.


Tue Dec 14, 2010 8:46 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Arranging for Respite Care
That interview where they decide whether they can accept your LO is a lot tougher on you than the LO. It's like a job interview....Derek wasn't too far off there. They are looking for the fit.

I know you need this respite more than anyone could possibly imagine. I am going to keep my fingers crossed that you will have success, that Derek will be on a "honeymoon" phase as long as he is there, and you will find the sweet Derek who is so glad to see you when you arrive each day to see him.

XXXXXX (Those are my fingers crossed.) Smiles, Nan


Tue Dec 14, 2010 8:49 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Arranging for Respite Care
Thanks, Lynn & Nan! I hope so, too! :P

_________________
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 Dec 14, 2010 9:14 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Arranging for Respite Care
I hope so too. You badly need rest and I hope you get lots of it. You have a host of friends who care about you!!!!

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Tue Dec 14, 2010 9:43 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Arranging for Respite Care
I know, and I'm so blessed! Thanks, Leone! :P

_________________
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 Dec 14, 2010 10:23 pm
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Joined: Tue Dec 23, 2008 8:52 am
Posts: 154
Location: Michigan
Post Re: Arranging for Respite Care
Me too, Pat.

Hope all goes well for you. Your back will say thank you too!

Karen


Tue Dec 14, 2010 11:25 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Arranging for Respite Care
Thank you, all of you, for your concern. His respite week is arranged and I take him in tomorrow! Oh, I so hope it works out well. I'm so busy today getting everything ready---clothes marked, catheter supplies boxed up, laundry done. I'm both dreading and looking forward to it.

Lynn advised me not to visit every day. I'm pondering this. It makes good sense as far as my getting rest and respite but this place is only half a mile from our home and I think I'd sleep better knowing he's OK. I know Lynn is right about bonding with other residents and staff but he's only going to be there a week so it may not be an issue. I'll have to pray about it. I'll let you know how it goes!

_________________
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 Dec 15, 2010 5:40 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Arranging for Respite Care
We're looking forward to your report. We may follow your example.

In fact, I talked with our CPA today and found that 'nursing care' for Dale is tax deductible. We passed the 7.5% of income level last year. Now I need to talk with an agency. I will definitely go the professional route. I need a break.

In my case, it's my neck. I have a literal 'pain in the neck'.... Don't laugh. :P

_________________
Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Wed Dec 15, 2010 5:50 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Arranging for Respite Care
Yes, Leone, last year we used that deduction, too, as Derek had over $40K in out-of-pocket medical/nursing care expenses in 2009.

_________________
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 Dec 15, 2010 6:34 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: Arranging for Respite Care
Pat, I hope it goes well for you and for Derek. I will be praying for you both.
Is there something you can do for yourself this week that is just for fun or enjoyment? That may be restful and rejuevenating for you.
PatS

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Wed Dec 15, 2010 9:15 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3339
Location: Vermont
Post Re: Arranging for Respite Care
Pat - you may want to ask someone you feel you can trust at the facility about visiting - they have experience with this. I just remember how hard it was for my dad when he first moved into the ALF. Every time I visited him at first it was like move-in day all over again. It was really hard on him. It was hard on me NOT to visit, but I kind of had to leave him on his own more than I would have liked so he could start fitting in. He wanted me to be with him all his waking hours there - I just couldn't do it. I needed a break, and my husband and family were back in VT so I'd go back to my dad's empty house which wasn't great either.
Anyway I am so glad you are taking a little break. Maybe a bunch of us should go to a fitness spa together! Don't I wish! Let us know how it goes tomorrow, and good luck Pat! 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 Dec 15, 2010 9:52 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Arranging for Respite Care
PatS, thank you! I so appreciate your prayers! I will have lunch with my girlfriend and maybe indulge one or two other small pleasures but mostly I shall bask in the peace and quiet of the house to myself for a week, catch up on some non-back-straining housework, read books, take long walks!!!! [Ahhhh!]...in other words, hang out. :P But how much I enjoy my respite will depend a good deal on how well he is doing at the SNF. Your prayers will help. Again, I appreciate so much the support and friendship of all of you. I could never get through this Lewy ordeal without you.

_________________
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 Dec 15, 2010 10:32 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Arranging for Respite Care
Pat,
I am glad you were able to arrange for Derek to be cared for so you can have a respite time and get some needed rest and heal that sore back !

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Irene Selak


Wed Dec 15, 2010 10:37 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Arranging for Respite Care
Thanks, Irene. And before bringing him home I have to find a better way to get him up in the morning. He doesn't want a hospital bed but I think we're going to have to have one. If I can crank the head of the bed up there's that much less lifting. [A hoyer lift is out, and the gals who came to do his assessment yesterday agreed that he is not a good candidate for one].

_________________
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 Dec 15, 2010 11:12 pm
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