Certainly I don’t need help.
Robert goes to a Day Program while I work so that’s already
more help than some of the other 40 million caregivers get. I feel fortunate I
have this great resource.
Almost 11 years ago when I started caring for Robert he
could walk unassisted and get dressed by himself. He needed help with
medications, time management, toileting, and making safe and healthy decisions
(like not wearing urine soaked clothes that had dried overnight).
The decline has been slow and steady but brutal. It is hard
to see a steep decline when living it day to day but sometimes it hits me just
how significant of a decline it has been.
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| Robert and Aunt Evelyn |
After each bout of pneumonia or the onset of Parkinsonism or
the relentless, ongoing seizure clusters, Richard and I picked up the slack with
the tasks Robert can no longer manage. Dressing has gone from picking out his
clothes and prompting him to pull up his socks to completely dressing him. Walking
unassisted transitioned to using a wheelchair just for long distances to using
it most of the time. Robert may use the walker at home but he can’t do so
unassisted. We walk next to him so he doesn’t fall but he still does fall. Falling
(or almost falling) means catching him or picking him up.
All 210 pounds of him.
Robert has developed other health issues which require
additional maintenance and medications to keep him as healthy as possible. I
now brush his teeth to reduce the bacteria in his mouth so there’s less of a
chance of pneumonia when he aspirates. We put the nebulizer mask on him twice a
day to keep his lungs open and healthy. His medications have changed and
increased so much that, for fun, I’d like to walk into a pharmaceutical school and
take their final exam to see how I do. I may not get an “A” but I think I’d
pass.
I have a strange idea of fun.
Incontinence has moved from urinary incontinence to
occasional bowel incontinence. Robert’s memory is so inconsistent that sometimes
I have to remind him which way to turn out of the bathroom to get to his
bedroom or explain that it’s breakfast time and not time for a scoop of Rocky
Road ice cream.
Still, I didn’t think we needed help. After all, there were
two of us taking care of Robert. The bulk of the physical work fell to me since
Richard has his own health issues but I was managing it okay – until I wasn’t.
My stroke last year was a wake-up call and I was determined
to make changes. I immediately started walking regularly, taking medications to
prevent another stroke and have greatly reduced my carb intake. For good
measure, I feel even more guilt than usual when I cave to those sugary
cravings. I do better about managing my stress and have no trouble saying “no”
to doing too much for too many on any given day.
My longer term goals related to caregiving were to hire a
housekeeper, take a respite and hire in-home care for Robert.
These goals took a little bit more work but I hired
housekeepers, fired them after not showing or calling and promptly hired
another company. I absolutely love this extra help and am grateful to be able
to afford such a luxury. Richard and I took a respite within a few months of my
stroke.
Two goals down; one to go.
I started my search for in-home care by posting an ad on
NextDoor and Care.com, telling friends and family I was looking and calling
several agencies. The referrals from friends were already working elsewhere,
replies to the ads were minimal at best and the agencies either didn’t show up
or were too expensive. (One rep came in and declined my offer to talk with
Robert. She wanted to get straight to the services, their cost and even pulled
out a contract. Um, thanks but no.)
The other problem with agencies? They only do medication “reminders.” I’m sorry, but no amount of reminding is
going to get Robert to take the correct medication. He needs to be handed a cup
with two pills at a time and told to take the meds.
Even while looking, I was having trouble nailing down
exactly what someone would do but decided a few hours a couple of days a week
would be helpful.
One of the hardest parts of providing care to Robert is the
constant interruptions and needs. He probably needs something every ten minutes.
If it isn’t him asking for something, I am restocking supplies and medications,
doing laundry, ordering more supplies and calling medical professionals and
health agencies.
It would be nice to have a two hour break a few days a week
but because it was proving to be so difficult to find care, my head started the
excuses reel:
How can someone help me for just a few hours a week? Will that really be helpful? I mean, I can change him myself and let him
watch Family Feud and have a few minutes to restock or do laundry or make calls.
Plus, what about our dog?
We have an older dog who doesn’t mind strangers but our “puppy” (who is
actually pushing seven years old) takes a while to welcome people into his
tribe. I wasn’t sure he would get used to someone.
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| Puppy and Oz |
Other Brother asked me how my search was going and how he
could help. I appreciated his offer to help pay for services but I refused to
pay an exorbitant amount for a small amount of in home care – no matter whose
money I was spending. Especially when Robert has the benefit of IHSS hours
(which means we can hire a care provider using these hours and the state pays
the person instead of us paying out of pocket).
I suppose that is one more excuse I was coming up with not
to hire help but I really tried to find in-home care. It just was not working
out – excuses or no excuses.
It became more difficult to find help than any benefit that
I could gain even if I did find it. I told myself that all the other changes I
had made after my stroke were enough. We were managing just fine, thank you
very much.
Over the next several months, the decline in Robert’s
mobility and health continued. There are more frequent bouts of pneumonia and
his mobility takes a worse hit each time. The last bout of pneumonia really
knocked him for a loop and he was in a Skilled Nursing Facility for a few weeks
to get intensive physical therapy.
Not showering Robert. Not dressing him. Not sorting his
medications. Not doing five loads of laundry a day (no joke). Not helping him
stand or keeping him upright while he was walking.
This was nice. I really, really liked having a break from
the physical part of caring for Robert.
We saw his mobility neurologist about a week after Robert
returned home and she saw just how much trouble he was having even just
adjusting himself in the wheelchair.
She looked at me and said, “You need to get in-home help.
This is too much.”
I love this doctor. She cares for Robert but also cares
about the impact caregiving has on me. She is smart and helpful and kind.
And she validated that what I am doing is a lot.
For some reason, I couldn’t do that for myself so let the
reasons for not hiring in-home care pile up.
She told me she hired caregivers for her mom who has
dementia and lives in an assisted living facility. She reminded me about
Care.com. She gave me a goal of finding a caregiver. Interview caregivers at
Starbucks, she said. Find someone you like then bring them into your home.
She gave me the steps to find someone. Her words were what I
needed to hear.
I told my best friend. I told Richard. I told Rachel. I told
Other Brother. Rachel had been trying to convince me to get help on our nightly
walks. My best friend told me she had been very close to calling Rachel and
staging an intervention so I would get some help.
They all agreed we needed help. They knew all along. It just
took me some time to see the benefit was worth the effort.
I renewed my efforts to find help. I placed another ad on
Care.com and got several applicants this time. I took time off work and set up
interviews at Starbucks. Some showed up, some were terrible, one was most
likely impaired.
None were right.
I continued screening applicants. I did a phone interview
and fell in love with someone but she had transportation issues. Then
scheduling issues. It didn’t look like this would work out.
Then, a miracle happened.
My son-in-law saw a post on NextDoor from a woman who only
wanted to work ten hours a week, was IHSS certified and lived a couple of miles
away. He texted me her info and I immediately called her.
She was everything I had thought would be a perfect
candidate: IHSS certified and she could work in the afternoons when Robert gets
home from Day Program.
She even liked dogs.
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| Crazy Puppy |
She came over and met Robert and Puppy. She loved Robert and
didn’t run screaming from the barking Puppy.
I hired her on the spot.
Puppy barked at her the first day and Evelyn took it in
stride. She gave him treats and Richard took him in the bedroom after a while so
she could work with Robert. I showed Evelyn the routine for after Day Program
and before we knew it, two hours had gone by.
Still, after the first day, I wasn’t sure if this was going
to work. Puppy and Richard can’t stay in the bedroom for hours every day.
Evelyn wanted someone who was mobile and Robert is, well, mostly mobile. I
worried about that “mostly” part.
And Puppy.
I felt better after Day Two. Evelyn told me she wanted to do
everything. She said I didn’t need to help her. She sweetly called me a mama
bear (I can’t argue with her there). I went in the office and worked on a
writing project. It was two hours of mostly uninterrupted time and it was
glorious.
Puppy was even warming up to her.
By Day Three, we were calling her Auntie Evelyn and Puppy
was comfortable enough to hang around her without barking.
Day Four Richard gave her a house key.
On Day Five, Richard had his first post-surgical appointment
at the time Robert was due home and I wanted to attend with him. We weren’t
sure if Evelyn and Puppy were ready to be alone together but Evelyn said she
was ready. Puppy was ready too – he ran circles around her when she came in and
then brought her a toy!
Mama Bear leaves them alone now; Auntie Evelyn and Robert
watch Family Feud after she gets him into his pajamas and while she folds
laundry. They laugh like old friends and are plotting how they can get on
Family Feud together.
She is everything I wanted in a caregiver. It took a year
but the effort to find help was worth it.
