With recurrent and chronic acute kidney injury, the only options available for my 80+ year old spouse was dialysis or no dialysis. Dialysis was out of the question, considering not only advanced age, weakened physical condition, comorbidities which include debilitating cancer, and the fact that my spouse refused the treatment. So, we decided to do in-home hospice for as long as we can. I have an adult daughter who is divorced, lives alone and has sporadic employment. She has committed to being the primary caregiver while I manage all matters related to household finances, full-time work, and the like. We want our loved one to be comfortable and cared for at home for as long as there is time left. We are prepping our home for this mode of care (bed in the living room with privacy screens, access to a nearby bathroom with a shower chair (and/or, a bedside commode if needed),
My hope is that my daughter is ready as well as willing to help me and help the care-workers as well. We have talked a great deal about what this change will mean for us all. Life will be forever different, and due to COVID-19, our home is a sanctuary where no one other than healhcare workers will be allowed inside.. but,
Are we making a mistake?
If the patient needs dialysis and is not getting it, their lifespan will be pretty short. May be a couple weeks at most. Toxins will build up in the blood stream rather quickly. Hospice staff can make him comfortable, even if he's in "home hospice."
We did explain to family that my dad is in hospice but in his case is not necessarily dying soon. But at 97 he has health issues requiring the additional services. I rely on hospice nurse to call me after they visit my dad. In time of COVID-19 when visitors are limited, I appreciate the status report.
I've told my family I would do what is best at the time. My dad is in board and care, my mom is at home with my brother, and I'm in a board and care to spend COVID-19 quarantine after a 90 day stay in SNF which had virus patients and I plan to go home after 2 months.
And this plan changes as our needs change.
I cared for my parents 24/7 for nine weeks when my dad was diagnosed with terminal cancer, and it was exhausting. My dad wasn't even bedridden until his last five days or so, but the mental strain wasn't what I counted on.
Fortunately, an ER doctor told me to consider hospice, and we signed up on the spot. Life suddenly became so much easier because I was able to shift my thoughts from caring FOR my dad to caring ABOUT my dad.
For me, the greatest value of hospice was at the end. I called them and said I just couldn't do it alone anymore, and the nurse came within two hours. In less than a day, my dad was gone, but the nurse was able to administer medications to make him comfortable which I'd been trying to do without much success.
The dying process isn't always pretty, so I recommend having someone there.
If you can get help to come in, you will need it. Turning & lifting anyone is very hard. But, I do understand what you want to do. Please make sure you have everything set, doctor visits( which now you do on your phone) all the equipment necessary, bathroom with shower,etc.
You may be ready, but not your daughter. Her heart is in the right place, but when push comes to shove, it's the most unbelievable hardest job there is. Mentally & physically.
My prayers go out to you. You love your husband & want him at home with you until the end. I understand & wish you well.
I can not say enough about the good care I got. I got support, education, a shoulder (actually many shoulders) to cry on. I got the equipment that I needed to care for my Husband safely and that allowed me to be able to keep him at home.
Personally I think you have made the right decision.
You will have a Nurse that will come in weekly to check on your loved one and order medications if necessary.
A CNA will some in a few times a week to help bathe, dress, check and order supplies and change bedding if necessary.
A Social Worker, Chaplain and other disciplines are available if you want.
You have made the right decision. Never question a decision made out of love. It is the right decision at the time.
I always said to myself If I made the right decisions and did the best that I could given the information I had at the time I could put my head on the pillow at night and sleep well knowing that I did the best that I could.
Sleep well tonight............