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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.

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CurlyGirly, how are you coping? Whether your Father has been set free of his illness or still with you, I hope you have found support & comfort.
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The CDC guidelines say that family can see their loved ones if it's an urgent or emergency situation. If your father is in that bad of shape (near death?), I would say that's at least urgent. Print out the guidelines and go back to the administrator. Good luck!
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ASK THE HIS DOCTOR ABOUT HOSPICE... PERHAPS THEY CAN IMPLEMENT AN EVALUATION FOR GETTING HOME...
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I also say take him home, and then, if it were my parent, stay with him as much as possible.
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He will probably do much better when he gets with you.

Long hospitalizations are tough and disorienting for everyone.
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I am praying for you. I just went through a very similar situation. Covid is a complete roller coaster ride. This is/was such a path of unknowns for me. I had the very same thoughts and fears you are experiencing. My dad passed away. I was able to talk to him through an outside window. He was so week. I said everything I wanted him to know. He passed away 24 hours later. This whole thing adds additional layers of stress to illness and end of life. I pray you receive wisdom, clarity, insight and strength. My heart truly goes out to you.
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Prayers sent to you.
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The staff are usually overworked to begin with. Most are very caring, that is why they are in that career.

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.
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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.
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You need to talk to doctor who treated him in the hospital. Call the hospital social worker and tell her you cannot make a decision without more information and you need that info from the doctor. Put in a call to the dr's office, too. After you get more info, you can make a decision.

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.
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IF, and only IF you know that you KNOW you have HELP that you can COUNT on, bring him home. Expect the absolute worst situation (totally bedridden and incontinent) and plan for that. Have a hospital bed, a lift, bedside commode, etc. Everything you could possibly need. Perhaps he is eligible for hospice and someone coming to help bathe him. If he is bedridden, he will need to be turned every few hours to prevent sores. If you can, get him a Hill-Rom bed that has a side to side tilt in addition to head and leg tilt.
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What hard decisions In front of your family. Also, please consider that if you chose hospice dad will no longer have his dialysis treatments. Dialysis is considered a life saving procedure & if one goes on hospice dialysis is discontinued. .
Dad may be tired of those 3x/week treatments as hemodialysis is very difficult on the elderly.
Prayers for you & your dad!
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CaringnieceinAZ Aug 2020
Hey Shane thanks for that information. I did not know that and I feel my answer should have been spot on. Now I will be holding back until I have better and accurate information.
Regards. C.J.
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Is he on palliative care? Will he be sent home with hospice help? If not, I suspect his care will be more than you can handle, and when he runs into problems with breathing there will be no help for it. The facilities, ALL OF THEM, are completely overwhelmed. And you may not get to visit. All of that is true. But without support I do not see how you can do this, and especially without hospice and medications to keep your father comfortable. If you try that I think you will be calling the Ambulance quickly and back to square one. Remember, hospice is NOT a death sentence but it is a recognition that death may occur within the next 6 months. Please don't attempt this without it. That would be my advice. I am a nurse, and I would not be doing it without hospice and their medications for comfort. Things can get very desperate very fast. I am so sorry you are going through this, and you are right, it is an almost impossible time to be able to communicae with people. This is what a pandemic looks like, and trust me, it may look a good deal worse in the fall. That is my personal fear.
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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
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I vote bring him home if your sister is willing to take shifts. Hospice at home will provide hoyer, bed, wheelchair etc. Hospice at home is not an immediate death sentence since he will be cared for by family. Inpatient hospice is more likely to sedate and not be available at his beckon call, changing a diaper with a hospital bed is easy. Moving with the lift is easy. For mom we rearranged the family room to accommodate the equipment, bed etc. This also kept mom in the family nucleus her last months. My mom passed at 95 a week ago. August 6th. I have zero regrets. I am 67 with psoriatic arthritis and was able to care for my mom these past months with all the equipment from hospice. My mom survived 8 months on Hospice at home. Only 3 weeks though after being totally bed ridden. Prayers for you and the family. So many on this forum push facilities but honestly I could not of lived with my self. Now I am helping dad, mom’s past few weeks alive he has had more mobility issues. Maybe I am the lucky one to have nice parents which maybe makes it easier on me. They both appreciated everything I have done and what I am still doing. I live across the street from dad so I am able to easily go back and forth when he naps.
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XenaJada Aug 2020
It makes a HUGE difference when they are nice vs. screaming and demanding!
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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.
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NobodyGetsIt Aug 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!
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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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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.
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Have you alerted any Hospice agencies? They will help you tremendously. We are in the same boat and are removing my MIL from Memory care and taking her home with us. Hospice will come 3 days a week to bathe and care for immediate needs. I will care for her the rest of the time. If your dad is in “crisis” mode Hospice may provide more care.
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.
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I'm so sorry your going thru this.
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.
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Coronavirus makes everything more difficult with elder care. Hospitals want to transfer patients when they are stable so that they can free up beds for people who need urgent care. Once he goes into a facility, you may not be able to visit. Or if the facility is like my mother's I can visit once every 2 weeks, with mask and social distancing. It is not very gratifying for either of us. If he is eligible for hospice, there may be help from hospice, but it probably depends on your (and his) location. Hospice may not be able to visit either if there are lockdown directives. However, if you are thinking of bringing him to your house you must realistically assess your own capabilities to care for him. Would you be able to lift him, bathe him, feed him, etc.? Is this something that you can talk over with him? One thing I've learned while I couldn't visit my mother from March until last weekend was that she is strong in her own way, and did fine without me. We're lucky that she is in a facility that is taking excellent care of her, better than I could do. I think of her often and hope that she knows that I love her, even if I can't be with her.
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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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Good morning. I can almost write you story except for the COVID part. Mom has moved in with us and now we are looking for a way out. DH has been called back to work and I will be returning shortly and Mom cannot be left alone for an hour let alone a full day. She refuses to let anyone in to come help as we have already tried that route and now wish we would have chosen somewhere for her where she could get the care that she needs. Most days I am exhausted bewtween trying to work from home and care for her that I feel I am making everyone else in our household miserable. Honestly it seems that there are no easy answers but just think long and hard before you decide. I honestly get both sides but you have to consider your father too and what would be best for him. Good luck.
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In a very similar situation I decided to bring my dad back to his home. We already had 24/7 home care and he was so happy to be back with my mother. The real issue you have is him being covid +.
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.
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Your stronger than you think and your Dad should be going home if at all possible not a facility.

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
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InFamilyService Aug 2020
Amen and Alleluia! Awesome story. My 85 year old dad passed at home surrounded by loving family and friends. Now my mom, 84, and an aunt ,91, are still in their homes with home care and family taking shifts to help. Exhausting but so worth it. They feel loved and have good care.
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If at all possible, your Dad would want to be home or brought to your house where is is familiar and feel the love of family.

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.
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gladimhere Aug 2020
Though some parents think and feel the complete opposite. I would never want to place the burden of my care on my children. They need to care for their own families, children and grandchildren. Send me to a nursing home.
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If he's been in the hospital that long chances are he will never walk again due to staying in bed. Medical facility do not want patients up and walking due to "no-fall" or zero fall policies so keeping them in bed ensures they don't fall, and do not have the manpower to get them walking. So either you have to get used to changing his diapers in bed including bowel movements or get him in a facility because that's the reality of caregiving. You also have to keep them on a bowel schedule because after a few days or so they get can get impacted which means it is stuck in there and you have to take him to the emergency room. He may be impacted now you don't know. You need to ask when his last bowel movement was. Caregiving is very hard work and you have to get over the feelings of changing and bathing them.

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
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Emilysjoy Aug 2020
May I please ask how long is LONG time with the feeding tube? If I’m asking too personal, I’m sorry and disreguard
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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.
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InFamilyService Aug 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.
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My situation is somewhat comparable to yours.

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.
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InFamilyService Aug 2020
Ask if someone from her facility if they would face time you so at least you can see mom. Even my aunt with dementia enjoys face timing the family that cannot visit often.
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Dear "CurlyGirly,"

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!
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