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.
Long hospitalizations are tough and disorienting for everyone.
Although your sister's idea is good in theory it is bad in practice. Chances are neither one of you are trained or capable of giving him the care he needs. It is very physically demanding.
It is sad that you cannot be with him but there is no other choice. There is no need to fear because it is out of your hands.
The decision, although difficult to accept is bluntly obvious. Put him into care home.
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.
One option is going to be that he goes to you or a sibling's house. So you might want to ask the relatives how everyone is going to help to care for him. If there's no one to help each day to provide the 24 hour care for him, or cannot afford in home care for him, then you'll know you have to find a facility. It's all about who can care for him 24 hrs a day. Even a person who is mobile and can do certain things for themselves will require some assistance during the day or night when they ask for it - so that's why you have to plan for 24 hr care.
And as a side note, if someone is willing to put him in their house - start rounding up all the supplies and medical equipment you'll need. Potty chairs, wheelchairs, walkers. The social worker can help you to get a medical bed if you need that, but much of what you're going to need comes out of your own pocket.
Dad may be tired of those 3x/week treatments as hemodialysis is very difficult on the elderly.
Prayers for you & your dad!
Regards. C.J.
"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!
we felt she needed a nursing facility as she feel and fractured her pelvic bone. It was way too expensive on top of the 4-5k monthly for the facility. Lack of empathy and care on the staff was our biggest concern and her mental status has declined. We are also discussing her longer term care with a elder attorney today to discuss how and what we can do with her and her monies to help pay for her care at my home.
Was your dad in the military during war time? Is he eligible for Medicaid?
sometimes these people and agencies can help you too.
I would start with your local Hospice to see what they can do for you. They are generally very kind and speedy to evaluate and get things going.
Good luck to you.
You aren't alone as the caregiver of my 85yrold father I've received the same phone call that he's being discharged and no one has called me prior to discuss his prognosis.I call back ,and say I need to speak with the doctor and until I do.My father will remain where he is until an informed decision can be made.
My father fell in April and although he could have benefitted from recovering at a SNF.I refused to send him due to my concerns over Covid19.
Deciding to care for your dad or place him in a facility during normal times is hard.
Discuss with your family if he does come home who will be tending to his care because it can't be solely on you.In the event that a facility is the end result that is when you must become like Columbo and leave no stone unturned.
Do your research if it's allowed with proper precautions visit beforehand.I wish you well.
He would be isolated in his bedroom but may be difficult finding home care. We used Concierage Care (they test their staff every two weeks) and then Vitas Hospice the last week of his life. Family was in and out visiting all the time. The best of luck to you and I hope he can come home. The hospital social worker should have been communicating with you and discharge planning.
You and your sister should at least try.
I know I would rather be at home and I'm sure you would too and so would your Dad.
There days, the environment of a Nursing home is not friendly. It is cold and lonely place and your Dad deserves love, peace and the feeling of being safe during his last days on earth.
You can get help and he can have meds to keep him comfortable.
His Insurance will pay for Home Health where a Nurse will come to your home to check on your Dad and a Physical Therapist will come once or twice a week and so will an Aide to bathe him.
You should at least give it a try so they'll be no regrets. Knowing you did the best you could.
I did this with my sister fir 3 months while she was dying of Cancer and now gir my 96 yr old Dad
He would be the safest, not going to a Nursing Facility.
Juse put yourself in his shoes and ask where you would rather be.
If he were my Dad, I would at least try letting him live with me before sending him off to a Facility.
Ask yourself can you do the care needed..if you are employed you will not be because taking care of someone like that is a full-time job. You CANNOT ever leave a bed ridden person alone!
You may not have any other choice but a nursing home. But patients tend to do poorly in those places due to the lack of staff, and they catch whatever is going around in there. If he is "with it" still he may get so depressed he will stop eating and drinking and give up the will to live.
If you choose to take him home family tends to take better care of their loved ones. Nursing homes are not safe. However, you will have to sacrifice yourself for your parent. You will and must learn how to do basic care such as bed baths, oral cleaning care, changing diapers, cleaning, and keep a bowel schedule. Been there..done that with my mom for years. She never been in a nursing home but it nearly destroyed me when she passed years and years later. Mum was only bed ridden for about 2-1/2 months I worked VERY hard keeping her ambulatory as long as I could. She simply forgot how to stand up and walk..her Alzheimer's was that severe. She could not coordinate her body to do that task. I ended up getting a feeding tube in her...that kept her body healthy for a LONG time. I knew how to take care of the feeding tube she never had a problem with it, but that was a last resort
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.
LO is 92, was diagnosed + in early April and has had ONE VIRUS NEGATIVE test since then.
The “die alone” thing is not so much a concern. PO was fierce in her Faith, and I too have the belief that her welcome to her “better place” will be sweetly Blessed. Unfortunately, I am beside myself trying to get to see her NOW. I AM DESPERATE to see how she looks and responds to move forward with care decisions, and frantic and obsessed with anxiety that I’m missing something about being approved for a visit. According to meager staff reports she has asked where I am, using my name.
I have no answer for you, because I don’t even have any answers for myself. I CAN tell you that the care and concern lavished on my LO has been wonderful. Communication from the facility has been a bit spotty, but I KNOW that the deal every day with an overwhelming burden.
Please keep posting. I hope my thoughts have been of some help to you, as yours have certainly been to me.
What a heartbreaking situation you and your sister are in with your father.
The positive here is that your dad is a "fighter." My FIL was a fighter. He had cancer and the doctors gave him six months - he lived thirty + more years. My mom is a fighter - she has Alzheimer's but, nearly died of severe dehydration, COVID-19, bi-lateral pneumonia and a severe UTI in mid-April. She survived after being in the hospital, going to a rehab facility for three weeks and my husband and I moving her to a new facility at the end of May. Honestly, I thought she would die in the hospital (I hadn't seen her since Feb. 28th) and I would have never been able to see her much less be with her as hospitals weren't allowing visitors. I'm also sorry you aren't getting what you need from hospital staff. The hospital my mom was in had their social worker and Chaplain call me to help. Can you call the hospital social worker?
Your situation has been made exponentially difficult between your sister wanting him home and you wanting him to be in a place where he has 24 hour care yet not being able to see him wherever that would be and being pretty much left in the dark by hospital staff.
I understand being paralyzed with fear which is usually the cause of indecision. Also, I understand your sister wanting to bring him home to pass in peace in the comfort of his own home. I think some of the guilt you may be feeling is due to the fact you and your sister are not on the same page and I wonder if one would end up blaming the other if something happened. I didn't want my mom to die alone either so I get it.
I agree with "funkygrandma59" about seeing if you can get hospice for him. That way they would keep him comfortable and let him pass in a peaceful, dignified manner. We used hospice in 2004 for my dad in my parent's home. Since my mom declined quickly after COVID, (prior to that she was walking, dressing herself and eating a little) she has since been bedridden, lost at least 20 pounds and no longer can dress herself. We got hospice care for her in the new facility she's in. I feel like they are a second pair of "eyes." I do "window visits" now but, the facility said if she is nearing death, I would be allowed in so I have some comfort in that. She is doing pretty well considering all she's been through. It was very hard for me to see how thin my mom's arms and legs had become after leaving her previous ALF/hospital/rehab so I know it was upsetting for you to see how feeble your father has become.
You're right when you say the isolation doesn't help your dad and it breaks my heart to think of all the elderly people who don't get to have family/loved ones able to visit them in person - they so long for connection, a touch, a hug. They already often feel forgotten or alone in ordinary circumstances but, the pandemic has really made those aspects all the more difficult for all of us.
There really aren't too many options here so I can only say that whatever option you are considering see if you have a sense of peace about it. For example because of COVID we had almost no options of where to place my mom. At one time the only type of place who would take her was a group home an hour and a half away round trip. I just could not shake the "feeling" that it was not the type of environment my mom would do well in. When we finally got an opportunity for the facility she's in now, there was a sense of peace and relief.
I will be praying for you - that God would give you the ability to make a decision that you will be comfortable with and I hope you will update us!