Hi All,
Any advice is helpful. My 88 yr old father went into hospital July 7. He is end stage renal failure, diabetic, no longer walking and has plenty of other obstacles to overcome, but he is a fighter. He went in because of complications with water retention and discovered he was Covid +
He has been quarantined in hospital for over 30 days and keeps getting tested with positive result. He is very weak and almost non-ambulatory - he was moved to a skilled nursing facility for 2 days and ended back in the ER to a different hospital from where he was. New doctors, new nurses to try and figure out what his going on with him. At this point they have treated the condition that got him there - yet with all this Covid - communication from hospital is horrible. I so understand that they are overwhelmed and understaffed but they need to be empathetic to family who have very limited contact with the family member.
Today I get a phone call they are ready to discharge my father - mind you we have yet to speak to a doctor on his current condition - how to resolve the underlying problem and his prognosis. It's make a decision go to skilled nursing or take him home. I already have a bad experience with him at the nursing facility - absolutely no contact and I saw him once from the outside patio door of his room. It was sad and especially to see him so feeble. I am trying to assess whether I can bring him home and take care of him until he passes or if he needs to go to a skilled nursing facility where he will most likely pass on...alone. It's terrible because I try and explain all this to the nurses, case mgrs but everyone is so busy and just running like machines that they cannot understand I don't have the necessary criteria to make an informed decision. My father's health has greatly gone downhill and the isolation does not help. The few and rare times the nurse face timed he barely says anything. They are using a hoyer lift to move him and my sister feels it's best to bring him home to pass on in peace and comfort of his home, I feel he should be in a place where 24hr care is available. Due to the Covid we have very limited help...all I know is the hospital is saying is immediate condition is stable and can be transferred. I want so bad to go in and see him so I can assess his condition...but we can't and all my sister keeps saying is I just don't want him to die alone. Neither do I but I don't think we can handle this and I am paralyzed with fear and indecision, yet riddled with guilt that I think he should be in a facility.
Is he at the point where he might qualify to go to a Hospice home near you? If so that would be a better choice where he would receive proper care. There are no easy answers here. You just have to trust that whatever you decide it's going to be ok.
And do remember, no one ever dies alone. Jesus will be there to welcome him home, along with loved ones that have gone on before him. Wishing you peace in the days ahead.
Thank you for that. It made me cry, but helped me with the feelings of guilt that have been wearing a groove in my tired mind for some months now.
"Aging, sickness and death is all a very hard experience" - yes it is. I grew up with my mom telling me "if you have your health, you've got everything" most everything else is small potatoes. Took me a very long time to get that!
Thank you for your kind words and prayers. Each has had something in an answer that i could take insight from and i thank you for the support. We spoke today to a palliative case manager, who was not only compassionate, but detailed in the delivery of the information and it gave me and my sister the clarity to make the best decision for my father.
Although we want him home, he needs more care than we are capable of providing, so a facility will have to be the answer for now. Waiting on an approval of where he can go that includes in-facility dialysis. The plus is today he tested negative for Covid - so we are thankful for that bit of news. The down side is even if he goes to a non-Covid facility he will still be quarantined and we will not be able to visit him. I hope there is some change in that guideline because nothing can ever compare to the compassion, care and love of a family member and i think it is very beneficial to recovery. The isolation process is horrible...for the patient as well as the family. Prayers and best wishes to all enduring hard times.
So...I called the hospice at 11pm. RN called back immediately. I told her I wanted him with me. Right here. I knew it was close and they knew too. The nurse said yes. She asked if I wanted her to get started now or wait until morning. She mentioned getting bed and oxygen and may have to wait for either. So I told her I woukd be at facility to help move him at 8am. On the way to facility my dads NH called me. Could I come up? My father is very near the end and hospice nurse is already there. I was on bus 8 minutes away. It was 7;44AM. My father died at 11:02AM. I was too late. I couldnt move him. His extremeties had already lost blood. The body saves the blood for the core keeping the organs running. I believe he waited for me. We always spoke and joked about it even! He said once, "If they call me you know Im going to have to go."
I told him, " Dad that wont happen. Ive got the phone, and Im telling them they have the wrong number." Then we would laugh and Id kiss him and say that he wasnt getting away from me so he had better stop dreaming.
You aaked about bringing him home so I assume you are able to do so financially. His insurance probably covers all the things you will need. A hospital bed will enable you to move him, dress him, change him, feed him, put ted hose on him (circulation hose), transfer him....Im not trying to scare you. I cared for my dad since he had his stroke, Nov 2003. I was very hands-on since he went toNH. I was there daily unless ill or the 4 vacations I took in 17 years. I loved being with my father. I loved every thing about him. And I ache missing everything about him. Everything.
I did not and do not want to imply that your loved one is getting less than adaquate care. If adaquate is what youre going for then fine. But it is not YOUR care. And it could be! And he would love that and you will never regret it. If he is dying TAKE HIM HOME.
Yes. It is very difficult. There is a lot to do. Lots of responsibility and people say they will help but they wont. They believe tgey will when they say it. So dont be angry at them. Just accept that it will be all you. And him. It was like that for me. But I didnt mind at all. I DO however feel I have been robbed of the last 92 days of his life. When he needed me most. He dies from isolation. No stimulation. No one talking with him. No one to give him his rootbeer, thickened. Or bring in steamed shrimp and detailed them and watched him wait impatiently while I ground them in the little machine I kept in his dresser. Dad didnt quite understand why I was at the window. Wow. I wrote a novel. Thank you for allowing me to answer. This was therapeutic for me. I needed to tell this story.
I dont regret a minute of the time Ive had with my father. I wish he was still here. If so Id be running to catch the light rail to get into the city to be with him. Every day.
Im not even sure what to do now! Hey let me know what you do.
Needed info:
Ombudsman for your state. Always go to top. Perhaps director will pass u along to county head but thats ok. Call the Area Agency on Aging or FSL, Foundation for Senior Living closest to you.
If you leave him in facility call the Nursing Home Licensing Board and get some facts on facility. They may direct you to a website but they may talk a bit. Ask them for advice. " How do I know this place is ok?"
Be a fierce and passionate advocate for him.
Long hospitalizations are tough and disorienting for everyone.
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