Monday, September 7, 2009

Seeking Respite Care

My mother had been living with us for six months when my husband and I decided to use respite services. I was exhausted and depleted, and my anxiety level had hit a new and scary high. It was clearly time to take a break.

We had two options to consider; in-home private care, and outside “rest home” facilities. Luckily, the stay at home choice was easy; my niece works for a company that provides this type of service. Finding a rest home took a bit more exploration.

After a week of research, I settled on a facility that met most of my criteria. I examined the place like a seasoned detective; looking over the room where my mother would be staying, speaking at length with the director, and rubbing shoulders with the staff to get a feel for their compassion level. All I was missing was a little black notebook and a trench coat.

With the two choices in place, it was time to present the news of our vacation to my mother, and to have her weigh in on the options for her care while we were gone.

Alzheimer’s sufferers lose so much of their independence. Offering them a say in decision making, even minimally, restores a feeling of capability and even a sense of self. Unfortunately, my mother loathed both options. She wanted to stay home alone and didn’t understand why that wasn’t possible. In the end, the choice rested with us and we settled on the rest home.

The next round of thought focused on getting my mother to the facility. Would she refuse to get into the car? Hang on to the outside banisters white-knuckled and weeping? And if she did, what do I do? My caregiver support group furnished the answer; prepare her as best you can, but in the end, drop her off even if you have to lie about where she’s going. Leave the rest to the professionals once she passes the respite home’s doors. They are well versed in these situations and it would be counterproductive to step in.

But isn't that just downright mean? Leaving my mother kicking and screaming?

I got a resounding NO. Mean would be not taking care of myself and hence not providing a consistently safe and healthy place for my mother; the old “if the plane is crashing put your oxygen mask on first,” logic.

When the highly anticipated day of dread rounded the calendar, I was incapable of “sending my mother away.” I was heartbroken and overrun with guilt. Dan had to do the unpleasant deed, and anticlimactically, she didn’t give him much of a problem.

How I found my mother upon our return surprised me. She was in the recreation room listening to a two-piece band, smiling and tapping her foot to “old-time” music. She waved me over the second she saw me, grabbed me in a dancer’s embrace, and guided me through a foxtrot and jitterbug. Her eyes were glowing, she moved fluidly, and she seemed at peace…more alert and whole. Topping that, the staff had fallen completely in love with her and considered hiding her from us when we arrived to take her home.

All this made me think; am I doing the right thing by keeping my mother with me? I asked her about it when we got into the car.

“Mum, would you prefer to stay in a place like that? To live there instead of with us?”

“Don’t be ridiculous. There is nothing like your own home.”

Is that true I wondered? It was almost hard to believe when the differences in her demeanor were so glaring.

As for me, I spent the first two days of vacation wholly consumed with thoughts of my mother; was she swinging from the chandeliers, holed up in her room like a frightened turtle, or, heaven forbid given her most recent symptoms, chasing the young seventy year olds up and down the hallways? By night three I had finally given worry a rest. Unfortunately, it was only a four day vacation.


  1. Keep in mind, this is all good news. She likes the place. The next vacation you can go with an easy mind. You can plan vacations without anxiety. Each time you may get a different response from her, but each time you can be sure you are doing the best you can.

    Straight From Hel

  2. Thanks Helen, we do have another vacation planned, longer this time, and I am less anxious about it. I do hope I am doing the best I can always...though sometimes I feel like I'm falling short.

  3. Important question about what is best for our parent suffering with such. We finally had to put Mom in a nursing home when she needed round the clock care that we could not provide. You will know when/if the time is right. Trust yourself.

  4. My father suffered from dementia too, and it was incredibly painful watching his mind go. Cancer may be the worst disease there is, but the one thing I would not wish on anyone is dementia.

    Will be back again soon. Just wanted to stop by for a moment.

    I wrote this a few days after he passed on - wanted to leave it with you

  5. Rayna, thank you for sharing such a beautiful memory of your father and in such a well written piece. I look forward to reading your other work. Thanks for dropping by.

  6. Sylvia, just the thought of it sends me into a full blown panic. But like you said here, and in your own blog, I know my gut will tell me when the time has come. I hope some other disease takes her first. I know it isn't the worst thing, her having to be cared for by others, but I have a lot of cultural stigma attached to putting her in someone else's hands. A blog for another day...

  7. Bless your heart. I am so glad your mother seemed to enjoy herself while you were away, I am sad you were unable to... eaten up with guilt and worry.

    You are a wonderfully sweet daughter. Your mother is very lucky.

  8. Thanks for the comment Tomara. Good news is we have another vacation coming up and I'll be a lot less worried (I think :-).