Caregiver Journal – the Search for Adult Group Homes

Journal entry by Denise Allen — Apr 15, 2015

Yesterday we met with another adult foster home provider in Mary’s hospital room. I toured their home after work; it is 10 minutes from my office and 25 from home. It would be easy to stop by after work – only 5 minutes away from my usual route. The home really is as lovely as their website showed. It is run by a nurse, and they have been there since 2001. They have three cats who socialize with the residents – something Mary would love! They’ve had vent patients there for 5-10 years, which tells me they have stability and good care, and that the patients were happy there. I called Mary and she agreed so I left a message last night with the hospital social worker to tell the home to go ahead and start the paperwork. In the meantime, we won’t stop looking because anything could happen during the paperwork process (they have to put a packet together and petition the state, blah blah blah and it could take 2-3 weeks).

Journal entry by Denise Allen — Apr 23, 2015

Today marks five weeks that Mary has been back in the hospital. Nine weeks since her trach surgery.

Yesterday I found out that my fears about last week’s group home were well-founded – they backed out after never even starting the paperwork. We are back to square one. This is a real disappointment in so many ways, but as I told a couple of people yesterday, our intention has been to find the best possible place for Mary to live where I can easily visit her often. I have to trust that this wasn’t the best place, despite what it looked like on the surface. The social worker will be making calls again today to the seven other ventilator homes in Oregon to see if there are any others that might have a bed available that didn’t have one two weeks ago.

Journal entry by Denise Allen — May 13, 2015

We are almost eight weeks into Mary’s hospital stay. Mary has been bed-ridden for three months. She has had several UTIs, and may have another one brewing at the moment.

We were able to Skype with all 3 kids and the grandson on Mother’s Day, although Mary slept through most of the weekend. She has been awake late at night and sleeping most of the day. It is partly due to lack of stimulation. I took in a CD player with some of her favorite music and will be contacting the county home-bound library for some books on CD for her.

As of yesterday, there are no potential group homes with beds available. There just are no beds available.

Journal entry by Denise Allen — May 19, 2015

Today marks 3 months since Mary was first hospitalized; tomorrow will be 3 months since her trach surgery and 2 months since her return to the hospital. The anxiety seems to be under control – what I’m seeing now is more like depression. Communication is getting more challenging, and as long as she is hospitalized, we can’t get the eye-gaze device expert to work with her because she can’t work in the hospital, she can only see people on home health. The lack of communication is frustrating to Mary and she is really isolated and isolating. I’m exhausted from running from work to the hospital, spending weekend days at the hospital, trying to survive on 5 hours of sleep (if I’m lucky). Only the basic housekeeping chores have been getting done: laundry and dishes. I don’t think I remember what a clean house looks like.

I’m hesitant to post this because I’m afraid of jinxing it, but we did meet with another adult foster care home yesterday morning. This is #3. There are only 9 in Oregon, and at least 2 of them are 2 hours away. This one is not far from my route between work and home. I’m cautiously optimistic; I’m honestly afraid of getting my hopes up again.

Caregiver Journal – the Search for Adult Group Homes

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