Homeward Bound
On December 4th, five months after what was to be an overnight procedure. 49 days in the ICU and nearly 3 months in a rehab facility, Marty had had enough and we brought him home. We were signed up for Palliative care and he needed round the clock care.
I began to search for caregivers who could help. Where ever you are there is assistance and you need to ask for help and begin the search.
I tried keeping watch at night, and after a few weeks I completely broke down. There were trips to the commode many times a night, he requested comfort and pain meds many times in the night. By the time morning came I was spent..Our case worker gave me advice, get caregivers at night so you can be there for him during the day. We had already set up a giveforward page to help raise funds and there were fundraisers which helped us afford the care. Again reach out to your neighbors and community. here is our giveforward site:
The search for more care resulted in faces that he knew, and my ability to come back to my center.
Marty was on a feeding tube and many meds per day. He needed suctioning about every few hours and trach cleaning as well as personal care. I was able to train the caregivers, from what I had learned. There was no need to hire a nurse at $60.00 an hour and some even came at only $10.00 per hour. But the average is $15.00 an hour. Especially if they are willing to be trained.
A Few Tips
Video monitor:
One of the best items I received was a baby video monitor. When I wish to go outside or go to a different part of the house, and can't have my eyes and ears on my husband, I can keep him with me. It's comforting for me and for him. There are many kinds, do a search on the internet and find what works for you. Mine also has the ability to talk to him from where I am, so I can let him know I am on my way if he calls out.
Primary care physician:
Our primary care physician makes house calls. She has a service like a concierge. She has a retainer and it was the best money we ever spent. One day after she became our doctor we had a company who does portable imaging bring the sonogram and x-ray machines come to our home. No trips needed to the ER.
Palliative care team:
We had nurses from the VNA, physical therapists, occupational therapists and a speech therapist help us on the long road back. We also had a wonderful respiratory therapist who helped up with a slow weaning process. A team, a wonderful team, crucial to his gaining strength and giving us confidence. They have encouraged Marty every step of the way.
Marty has had 4 trips to the hospital since we have been home. The last one lasted 3 weeks. We are home again, and as any caregiver knows it is not a steady trajectory upwards, but more like waves in an upward direction and sometimes you take many steps backward.
But we are moving forward.
In the next blog I will address weaning somebody off the ventilator at home.
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