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Welcome to My World – A Caregiver’s Frustration
Since we’ve been receiving hospice care, a nurse visits our home twice a week and we really appreciate those visits. Because of her declining mental and physical abilities, Gladys’ care is becoming increasingly frustrating. For the past few days, it has been very difficult for Gladys to stand up and walk. In fact, we don’t even take her to the bathroom anymore, we just try to get her to take the few steps to the bedside commode.
This past Monday our home health aid and the nurse arrived about the same time. They were surprised that it took both of them to get Gladys out of her chair and stand her up to her walker. Of course Gladys told the nurse that she felt fine and everything was going well. They looked at me, surprised at the effort that it took for both of them to help her up. I just looked at them and said “Welcome to My World.”
More change is in store because my husband, Fred, starts working next week. It will be an adjustment because he helps me a lot with Gladys. I have added another day for our sitter, so that will be some relief and allow me to run errands and do other things I need to do.
All we can do is take it one day at a time and do the best we can. It gets a little frustrating but so far we’re managing.
Our First Weekend of Respite Care
Respite care is the provision of short-term, temporary relief to those who are caring for family members who might otherwise require permanent placement in a facility outside the home. (definition from Wikipedia)
Last weekend we took advantage of respite services offered by our hospice provider. In order to receive the services we had to request a date and set it up in advance. About a month ago, I gave them two sets of dates from which to work. The social worker checked with the three nursing homes they use to see if beds were available for either of the dates provided. One of the nursing homes had a bed available for my second choice, April 30 – May 2. We took it.
Why We Opted For Respite Care
Most people use respite care to rest or to take a trip. We used it to work. Gladys is losing control of her hands; as a result, she drops a lot of food and spills a lot of drinks. We decided it was time to pull up the carpet in her room and replace it with something that was easier to clean – linoleum. We couldn’t do this with Gladys at home because she can’t walk up stairs and we wouldn’t have anyplace to put her while we worked. So we decided on respite care.
The Plan
- Enlist the help of husband, daughter and daughter’s boyfriend
- Get a commitment from said family members to help for the three days
- Friday: 1) Take Gladys to the nursing home by 9:00 AM. 2) Remove all furniture and items from Gladys’ room and storage area. 3) Paint bedroom and storage area.
- Saturday: 1) Installers remove carpet; prep the floor, install linoleum and shoe mold. 2) We paint shoe mold and baseboards. 3) Let floor settle.
- Sunday: 1) Move furniture back in. 2) Assemble closet organizer. 3) convert storage area to a walk in closet. 4) Install new blinds and sheers. 5) Bring Gladys home.
Reflections
Even though we worked during our weekend of respite care, I was surprised at how restful those three days were. Just as the definition says, it was a relief – a relief to not constantly check on Gladys; a relief to sleep through the night without listening for sounds coming from the baby monitor; a relief to get up in the morning and have a leisurely cup of coffee. It was restful in a different kind of way.
I was apprehensive about leaving Gladys with strangers but it was comforting to know that there was a staff of nurses to take care of her. I also thought I would go by each day to check on her but at the end of the day I was too tired from painting and moving furniture.
All in all, my plan for the weekend went well, and a lot was accomplished. Next week I’ll give some feedback on the facility.
We Hired An In-Home Caregiver
In my last post I shared that Gladys’ adult day care had given us notice that they would no longer be able to accommodate her and I began looking for in-home care. We use the services of Hospice Advantage who had assigned us a social worker, Stephanie. When I told her about our situation, she sent me a list of agencies and private sitters. The agencies were just too expensive for us so I started calling the private sitters on the list.
I was very impressed with one of the sitters, Tami. I called her on Wednesday, checked her references on Thursday and interviewed her at my home on Saturday. Fred and I both like her. I also checked with Stephanie and asked how the private sitter list was comprised. It turns out that when Stephanie visits her hospice clients, she observes how the caregivers interact with their patients. If Stephanie is impressed, she adds them to her list.
We Hired Tami
We hired Tami. Today is the end of her third week with us and so far we are very pleased. Before we hired Tami, I called both of our daughters and told them about her background and her references. My oldest daughter Nichole, was concerned that she had only worked for two of the families for 4 months and 8 months. She wanted to know why “she couldn’t keep a job.” I told Nichole that her tenure with those families was short because the patients had died. Nichole was alarmed and said, “You don’t want to hire her, she might kill Aunt Gladys too.” I told Nichole to relax. Tami had primarily been a live-in caregiver who cared for terminally ill patients.
We Made An Agreement
An Internet search provided several contract samples. I used a contract from Agis.com and modified it to suit my needs. Tami works three days a week. In addition to routine caregiver duties she coaches Gladys through her physical therapy exercises and when the weather is pleasant, Tami puts Gladys in her wheel chair and walks her around the subdivision.
So far, we are very pleased with Tami. Gladys is receiving good care and we are comfortable having her in our home. More Updates later.
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