Subscribe to RSSThe Ever Changing Life of A Family Caregiver
It’s been a month or so since I posted here and a lot has happened. Life in general is full of change and unexpected occurrences. Those of us who take care of family members with Alzheimer’s disease or dementia are very familiar with change. We’ve had a full schedule recently – car problems, job issues and most importantly caregiver issues. We have to find new care options for Gladys.
Car Issues
We all know that car problems occur when we least expect them or are the least prepared to pay for them. Over the past two months we had the key problem that I talked about in the previous post. That problem was more frustrating than anything and unreasonably expensive. Just before the key problem we had to replace the front struts. Now it’s the catalytic converter.
Job Issues
A lot has been going on at the church. Recent staff changes has caused all of us to pitch in more to make sure things don’t fall through the cracks.
Caregiver Issues
Last month Gladys’ adult day care told me that they didn’t think they would be able to accommodate Gladys much longer. She was beginning to require too much care.
- she needs help sitting down and getting up
- she needs help going to the bathroom and adjusting her clothes
- she’s getting confused at mealtime and forgets how to use her utensils or thinks her banana is a fork
- she’s moving extremely slow
- she’s not participating in activities because she keeps falling asleep
Last week the day care called and said that April 30th would have to be Gladys’ last day.
When I got the first call, I began to explore our care options and possible funding assistance. Unfortunately, her income just meets the cut off amount to qualify for assistance.
Hospice Help
About nine months ago I met a young lady from Hospice Advantage who told me to contact her if I ever needed any help. Like so many other people, I thought hospice only took care of people who were dying. Not So! I contacted the young lady, told her my situation. This is what happened:
- a nurse came out to evaluate Gladys (she qualified for services)
- a nurse visits twice a week to check Gladys’ vitals and her overall condition
- a home health aid comes by three times a week to bathe, dress and groom Gladys
- they supply her disposable briefs, disposable underpads, perineal wash, dry skin cream and some of her medications
- a social worker was assigned to assist us
- we have access to an on-call nurse 24 hours/day
- they provide 5 days of respite care per quarter
- gave us a list of recommended agencies and private caregivers
The services offered by hospice don’t resolve daily care issues but the services they provide are a big help and free up some finances.
Care options
- Quit my job and take care of Gladys full-time
- Hire an unemployed friend or church member to take care of Gladys
- Employ the services of an agency that provides CNA’s and trained caregivers
- Employ the services of an independent CNA or trained caregiver
Here’s where we are with care options: 1) I need my job; 2) hiring a friend or church member may not work out and potentially damage relationships; 3) agencies offer a good service but are too expensive (for us) for long term care. That brings us to 4) employ an independent caregiver.
I went through the list provided by hospice and called for rates. I contacted the agencies and the private sitters. I was very impressed with one of the private sitters and contacted her references. She is primarily a live-in hospice caregiver but I am only looking for 3 days per week. Her previous clients gave her outstanding recommendations.
We will interview her this afternoon. I’ll keep you posted.
The Car, The Key, The Brain and Dementia
About two weeks ago, my husband and I were leaving church but his car key wouldn’t unlock the door. Thinking his key battery was dead, I tried my key and it wouldn’t unlock the door either. After a few minutes, it finally worked. Thinking it was a fluke, we forgot about it until a few days later, the car wouldn’t start. I called my mechanic who told me that after about six years, the car can begin to forget the key. My car is 10 years old, so supposedly it is overdue.
I put an update on my Facebook page that said:
My car and key have become estranged. The car doesn’t recognize the key – gotta order new ones so I’ll be out of commission for a while until new key arrives. Almost got stranded at Walgreens yesterday when the car would not start.
What I wanted to say is – my car has Alzheimer’s; but Facebook isn’t the place to put a politically incorrect statement without an appropriate explanation.
I looked at the key to my car and thought about how it reminded me of the brain and dementia. They key has two batteries in it that power locking and unlocking the doors and the trunk. But it also has a little computer chip in it that is kind of the brains of the car that tells the key which doors and trunks to unlock. In addition to starting the car, the key aids in programing driver preferences. For instance, when I start the car with my key after my husband has used the car; it also adjusts the seat, lumbar support, side view mirror and steering wheel position to my preferences. My husbands key does the same.
To rectify this problem, we had to take the keys back to the dealership. They ordered the keys from Houston to be programmed based on the VIN number for the car. Of course, I’ll have to reset my preferences, but when I get my keys back, they should recognize my car so it will do what it is supposed to do. Right now I am waiting for the dealership to send me new keys.
Wouldn’t it be wonderful if our brains could be re-programmed like car keys. What if someplace there was a blueprint of our brains that could be reprogrammed when parts of our brains forget what they are supposed to do? Wouldn’t it be great if it was just that simple?
Note: My new key came in after I finished this post. We had to let it sit in the ignition for about an hour to download information from the car. Amazing!
Don’t you think it would be great if we could do this with people?
It’s A Family Affair
It’s been almost two years since we started taking care of Gladys. We have had our share of good days and bad days. We’ve had many moments of laughter and times when we just wanted to scream. The one thing that has been consistent in our caregiving is teamwork. It’s something that I cherish and it’s something that I’m well aware that some families don’t have when it comes to taking care of elderly family members.
Our normal morning routine is: I wake Gladys up, get her showered, dressed and hair combed. Fred prepares her breakfast, takes it to her room, gives Gladys her morning medicine and then her breakfast. The routine isn’t perfect because sometimes we disagree on what he prepares or the amount of food he gives Gladys. Sometimes I want him to give her yogurt with her breakfast but since he doesn’t like yogurt, he won’t give it to Gladys either. So we have basically come to an agreement – if he feeds her, I can’t tell him what to do. So yogurt usually ends up being one of her snacks or she’ll get yogurt when I fix her breakfast, which is usually once or twice a week.
Gladys has a good appetite and looks forward to every meal. On Saturdays she often gets one of her favorite meals – cinnamon, raisin bagels, cream cheese, coffee and yogurt. When she sees the bagel she starts singing the Campbell Soup song, “mmm, mmm, good.” Breakfast today was oatmeal, prunes and a glass of milk. I thought she had too many prunes but I didn’t say anything. I thought about slipping a few of them out of the bowl but I didn’t. 
