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Respite Care redux
Posted: Friday, August 16, 2019 6:15 PM
Joined: 3/10/2019
Posts: 145

So I posted a question about respite care a few weeks ago and got good replies (thank you everyone!).  But the situation has evolved a bit and now I need new advice.

I am going out of town for four days over Labor Day weekend and have arranged for DH to be in a memory care unit while I'm away.  I visited the facility and it is pleasant and comfortable.  The staff were friendly.  It's not full so he will get lots of individual attention if he wants it.
 I was hoping our primary care doctor would give me a fiblet to use to make the transition easier for him.  He does not appear to have AD, but either mixed dementia or Lewy Body.  His balance and coordination are terrible, but he can still remember  some things and is pretty conversant. In other words, he is still aware.

Unfortunately, the primary care doc will not fib.  She wants me to tell him outright I'm going out of town and he has to stay in a facility.  I feel like this is a bad idea and will only cause him stress and angst.  Even if I tell him and he agrees, there is no guarantee he will be cooperative when the day comes.  Recent example: his neurologist ordered a DAT scan last month, and when I told DH about it the first time, he agreed it would be a useful test and was calm and reasonable. Then the day before the test, he freaked out and said he thought the neurologist was going to irradiate his brain and turn him into a Chernobyl victim.  Sigh. We went up a little on the Seroquel dose after that.  So I'm very leery of explaining too much about respite care.  Any advice about how to make this work?

Posted: Friday, August 16, 2019 10:16 PM
Joined: 2/2/2019
Posts: 156

You are a better judge of how DH will handle this situation than the doctor. If you have concerns about his reaction to being told about a respite stay in memory care, a fiblet may be the best option. Does he know what the memory care unit is? Can you tell him that this place needs help for the weekend and will provide him with room and board for his volunteering? Or, the business needs his help in evaluating their services.....I have no experience with this type of situation so I do hope someone who has can offer suggestions.
Posted: Saturday, August 17, 2019 10:41 AM
Joined: 6/3/2013
Posts: 792

Being asked to tell a fiblet is an ethical issue for your husband’s PCP (I am also a PCP). 

I recall being away overnight in the next city, for some continuing education, leaving my aware EOAD husband in the company of friends. It was a disaster. Friends called during the conference stating that my husband was distraught, thinking I had abandoned him.  I left the conference and did not leave my husband again for four years, until he was placed in MC.

This week I am scattering his ashes on the lake where he grew up. 

Posted: Saturday, August 17, 2019 10:54 AM
Joined: 12/7/2016
Posts: 43

So sorry for your loss Marta.
Rescue mom
Posted: Saturday, August 17, 2019 11:00 AM
Joined: 10/12/2018
Posts: 1475

Much advance notice, IME, is not good. My DH just got anxious and upset—if and when he remembered, which was not often, or when I would mention it. It worked best for him if I just said “ok get in the car, we’re going..(wherever)” or “ok I’m going now, back (whenever)”.

Advance notice just led to anxiety and upset on his part.

Mine was sometimes unhappy that I was gone, but he was well-cared for and safe, so..everybody got through it. As soon as I get home, he forgets I’ve been gone.

I use fibs to avoid upset, but not sure I understand how a fib from your doc would help here? If your DH is aware, won’t he know you’re gone and he’s not at home? Not sure how a fiblet helps with that.

But in general, docs I deal with won’t fib to patients either. They may not tell them everything, or may redirect or change the subject, or avoid, but they won’t fib. 

Posted: Saturday, August 17, 2019 11:19 AM
Joined: 6/3/2013
Posts: 792

Thank you, madmary.
Posted: Sunday, August 18, 2019 10:02 AM
Joined: 3/10/2019
Posts: 145


Thanks for the advice everyone.  Unfortunately, I'm realizing dementia does not respect travel plans.  Yesterday DH had what looked like a TIA, seizure or "unresponsive episode."   I know the disease process can cause these things, and often they resolve on their own, but it was still terrifying.  I called our home health/palliative care agency but by the time the nurses came over he was up and around again.  His cognition was off for a few hours, but he gradually improved over the course of the day.  This morning he is pretty much back to baseline.  But I am rethinking my travel/respite care plans since I'm not sure what is going on.  

We still don't have a formal diagnosis yet, but he is developing the Lewy Body trait of freezing in place from time to time; also lapsing into more space-out staring episodes, especially while he is eating or conversing.  He just kind of zones out in the middle of a sentence.  If I tap him on the arm he will blink and sometimes restart the conversation.  But it's kind of alarming.  Really wish I had more guidance from medical professionals to know how to interpret these things.


Posted: Sunday, August 18, 2019 10:13 AM
Joined: 6/21/2019
Posts: 685


You do need to take that respite break.

Can you get him into the facility, and then tell him there that he'll be staying a few days?

My wife is at the end stage of what your DH is experiencing with LBD. The longer you wait to take that break, the worse his symptoms are going to become, and it may be harder then for you to want to be away from him. Parkinson's with LBD is very ugly.

 If you've thought about a respite break, then you need a break. Don't rethink it too long.

Posted: Sunday, August 18, 2019 12:00 PM
Joined: 3/10/2019
Posts: 145


Army Vet, you are right.  I need this break.  I work full time (mostly from home this year), and am sole caregiver for DH.  That means I do all the shopping, trips to doctors, meal prep, medication management, arranging for home repairs, lawn care, laundry..etc.  This trip is not  vacation, but a chance to visit family on the one year anniversary of my father's death.  In short, I am a wreck and this trip is a breath of air that will help sustain me for what is ahead.  But dementia is such a sticky disease.  It coats everything I do and I can't get away even when I am away.  If DH is starting to have TIAs or seizures I will fret too much to enjoy myself.

  I am a big believer in palliative care philosophy, and want him to have as many good days as possible in the time he has left. He is happiest being at home with me and our dogs.  We live in the country and have hummingbirds and frogs and turtles all around and these things breathe life into him.  Most days I load silly comedies on the IPad for him to watch while I work, and I can hear him laughing in the next room.  It keeps me going.  I'm afraid four days alone in a facility--no matter how nice--may be enough for these last remaining pieces of his old self to fade away.

I may still go. 

Posted: Sunday, August 18, 2019 12:14 PM
Joined: 4/2/2018
Posts: 2740

You NEED the break. Enough said!
Posted: Sunday, August 18, 2019 1:16 PM
Joined: 2/2/2019
Posts: 156

Please do not rethink your decision to spend a short time with your family. You have made arrangements for respite at a facility that can provide the care your DH requires. You need to care for yourself as well.
Posted: Sunday, August 18, 2019 4:14 PM
Joined: 2/8/2018
Posts: 71

I use respite care about three times a year.  I tell DH what I am doing, but don’t tell him the whole story.  For instance, Parent’s weekend at the kids’ colleges becomes Mom’s weekend.  He can understand this.  He still frets and asks me a million times where I am going and when I am coming back.  But he does this when I go to the grocery store!  So I just answer I will be back soon.

My two cents is go to your family get together.  None of us knows what tomorrow will bring let alone an hour from now.  I always find when I get a breather I arrive home refreshed and more patient with my DH.