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Elder Care: Fast Decline Can Catch You Off Guard
In April I wrote a post about Gladys’ declining mental and physical capabilities. At that time the adult day care she was attending, informed us that they wouldn’t be able to keep her as a client past the end of the month. Since then, it’s been four and a half months of constant change. We are in the season of elder care where it’s become very difficult.
Gladys’ decline has progressed so rapidly that it caught us off guard. We expected decline but not so much in such a short period of time. Initially, I hired our sitter, Tami, to come for three days a week – the two days that I work and an extra day so I could run some errands. However, because of the rapid change in Gladys’ condition, I added another day at the end of July. By October, I expect to have Tami coming five days a week.
Three weeks ago, Gladys could walk about 15 steps. Those steps were very slow and unsteady. Two weeks ago those 15 steps became about six steps. Today she can’t walk at all. There are also other areas of decline that have taken place since April:
- She can’t stand
- She cannot sit up without assistance
- She can’t roll or turn from side to side
- Her left hand is claw-like and her right hand is on it’s way
- She can only feed herself finger food
- She can’t use a fork or hold a cup
- She has difficulty swallowing her medicine
- She hallucinates
Hospice ordered a Hoya lift that we use to move Gladys from her bed to her recliner. I don’t know what we would do without the lift because trying to move her is like moving dead weight. It’s impossible to explain to Gladys that we need to roll her so we can change her diaper, bathe her or change her clothes. She just doesn’t understand instructions.
Dealing with Gladys now is very frustrating for several reasons: first because she doesn’t understand what’s going on; second because she has no cartilage so it’s very painful when we move her; third because she resists and pushes against us when we try to move her; fourth because she fusses and wants to know “why are you doing this to me;” and fifth because she has no idea that she can’t do any of the things that I mentioned above. She thinks that she if fully functional.
So far I still handle my frustrations with humor. After I walk away, about 30 minutes later I can still laugh at the absurdity of what Gladys has said or done. Just yesterday, Gladys was fussing at me and I fussed back at her. My husband asked, “Why are you trying to reason with her? You know she doesn’t understand.” I said to him “I know that but it helps me get it off my chest. Plus, I know that five minutes later, she won’t remember any of this?” We both had a good laugh, and I felt better.
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The Ever Changing Life of A Family Caregiver
Debunking the Hospice Myth
Gladys receives services from Hospice Advantage twice a week. When I mention this to friends or in casual conversation with acquaintances, they get sad looks on their faces, assuming Gladys is on her death bed.
I used to think that hospice was a place where people went to die. I met a hospice representative, Cara, at a health fair and we struck up a conversation. She explained that they also provide services for dementia patients and told me to call them when I thought I might need their services. She would send someone out to evaluate Gladys to see if she qualified for hospice care.
A month or so after that conversation, we were notified by Gladys’ day care that they could no longer accommodate her because she was beginning to require too much individual attention and care. I called Cara, she sent someone to evaluate Gladys and we began using their services.
Unless you live with and take care of someone with limited physical capabilities, it may be difficult to understand how much it means for someone else to bathe, groom and dress your family member, even for just a few days a week. The nurse coming by on a regular basis also cuts down on doctor visits, not to mention the “event” of getting Gladys out of the house and into a car.
The following quote is from the Hospice Advantage August 2010 Newsletter
Myth: Hospice is a place
Reality: Hospice is a service
Another myth about hospice is that hospice is a place. The reality is that hospice is actually a service and can be provided in several different places. Hospice services can be provided in a nursing facility, an assisted living facility, a hospital, an inpatient hospice unit, or a patient’s home. In fact over 68% of hospice care is delivered to patients in their own home, where they want to be. Services are provided by an interdisciplinary team consisting of nurses, nurse aids, doctors, social workers, chaplains, and volunteers. There are also many different hospice companies that, for the most part, offer the same kind of services.
Twice a week a nurse comes by to check:
- her vital signs
- her weight
- that she is still eating
- pain/comfort level
- general mental and physical deterioration
Twice a week a home health aid comes by to:
- bathe and dress Gladys
- comb her hair
- change her bed
- bring supplies
The home health aid also:
- gave me instruction on helping Gladys stand, sit and walk
- showed me how to change her while she is in the bed
They also provide:
- adult diapers
- disposable bed pads
- wipes
- dry skin cream
- perineal wash
Equipment provided so far:
- hospital bed and table
- hoya lift
- oxygen
These services are not free but they are covered by medicare. We have the option of using the home health aid three days a week but we don’t. Other services available include a social worker, respite care, volunteer sitters (available for a few hours) and a chaplain. We don’t use the chaplain service – I work in ministry so this isn’t a service I require. We also haven’t used the volunteer sitters yet.
If you are the primary caregiver for someone who lives with you, these services will give you a little relief both physically and financially.
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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