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.

I would highly recommend enlisting the help of a hospice services. They are well versed on end of life health care issue and will also be knowledgeable about the availability of facilties in the area as well in home services ....a geriatric case would also be anotherb option to consider
Helpful Answer (1)
Reply to Lynn Harrelson

I am sorry for what you and your family are going through. Bringing your father home will require a LOT of hard work and care. Sounds like he would need round the clock care. Are you willing to supply that or pay someone to help you? If not, then a facility is really the only other option.

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.
Helpful Answer (6)
Reply to funkygrandma59
PeeWee57 Aug 11, 2020
"No one ever dies alone. Jesus will be there..."

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.
About your emotions, fear and guilt plus love for your father, know that no decision is going to be 100% right, whether you bring him home or leave him in a place with 24 hour care. No matter how long you grapple with indecision, none of the decisions will bring 100% relief. Aging, sickness, and death is all a very hard experience.
Helpful Answer (4)
Reply to ptreyesbunny
NobodyGetsIt Aug 13, 2020
Well said "ptreyesbunny" - you are so right about "none of the decisions will bring 100% relief" - I still grapple with the majority of decisions that were made or in some instances not made. We just have to hope they will at least provide "some" relief.

"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!
Hi All

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.
Helpful Answer (3)
Reply to CurlyGirly
InFamilyService Aug 13, 2020
The best of luck to you. If you have peace about this decision then it's the right thing for your family. Each family is uniquely different.
See 2 more replies
Think carefully about bringing him home - is the rest of your family able to assist? F/T caretaking will take a toll on you quickly. I'm not sure how old you are or what kind of physical shape but it will be hard. I know the hospitals want to get rid of patients quickly to free up space. My mom suffered a stroke at 93 - was in the hospital for 3 days and we got the call she could be released. I asked released where - rehab? No home! I work F/T and my home is not equipped to handle a stroke patient. She lived with me for the past 3 years and it was getting more and more difficult to care for her. She was getting harder to deal with and would not listen to me or even go to the doctor! They also told me she would need constant direction and assistance with basic life skills. She is now in a SNF and can walk, and talk and is doing lots of therapy. But it is HELL - she lost 11 lbs., they don't have the beauty shop open so her hair looks horrible and that was her crowning glory, the food is terrible too so I run meals up to her and protein shakes. Due to COVID-19 moving her to AL has been delayed. She will have her own room, bed, good food, and privacy. We hope she can still have some quality of life but this pandemic is making everything so horrible. I've seen her twice through the glass and I couldn't hear her and she couldn't hear me. Blessings to you during this difficult decision.
Helpful Answer (3)
Reply to Texasgal

Talk to his doctor about your father's prognosis. Talk to the nurses about his daily routine and the help he receives. If he needs round the clock care and the lifting is beyond your abilities, you will need help in caring for him. If his prognosis is poor or the doctor considers him terminal, ask the doctor to write a prescription for hospice. Hospice can be in a facility or at home. The goals are to keep the client comfortable and allow interaction with family and friends. With COVID, most facilities are not allowing visitors except for "day of death", which appears too strict to me.
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Reply to Taarna

Please please please take him home! Please! I was too late. Dont make my mistake. I called hospice and they met me at the NH. The nurse and I spoke, I signed the contract.....and then later that evening I just couldnt stand the thought of him there alone. Confined to his room because he is non-ambulatory and is 100% dependent on the people who were working long hours, have kids, drive to places, get gas, buy groceries, have grandkids, etc...etc.. so they were scarier than I knew I was being about COVID. Taking temp 4x a day. Eating right. Staying healthy so I can RUN to him when possible!
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.
Helpful Answer (3)
Reply to CaringnieceinAZ

He will probably do much better when he gets with you.

Long hospitalizations are tough and disorienting for everyone.
Helpful Answer (3)
Reply to ACaringDaughter

Not wanting him to die alone is certainly understandable. I would talk to any candidate facility and get confirmation from them that you'd be allowed to be with him in person if he went to hospice care. Attitudes about isolating elders has been evolving during the outbreak. Your father sounds like he would require a lot of care in your home, and you'd need to make sure there is in-home care ready and available for help. My MIL is 85 in LTC and just survived 4 weeks of covid, but she had no other underlying conditions like your father. Your post says your father keeps testing positive...are you willing to expose yourself? What would happen to your father in your home if you became ill? Lots to think "wrong" answer for you. Wishing you all the best and peace in your heart no matter what you decide.
Helpful Answer (2)
Reply to Geaton777

The decision to take a loved one home or put them in a nursing home is a hard decision. But it is also an individual decision. Not everyone can care for their loved ones at home. No matter what decision you make, no one has the right to judge you. In your heart you will know what you need to do. Once you make the decision, you and your family have to live with it. So no one can tell you one way or another what is best for you and your family. Just know that you are not alone. Dig deep in your soul and you will find the answer.
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Reply to Chergal

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