COVID isolated and lonely with accelerated decline, my 91 year old mom has late stage dementia....bring her home to pass or let it be?

my father turned 97 in late March, we saw him last in early March before they shut things down.  You can call in and ask how she is doing.  My father was in late states also with dementia and probably didn't realize that we had not been in to see him.  When he got close to passing the nurse called and said that if we wanted to come in to see him (she suggested as it was only a matter of time) we could.  We went into to see him, he was resting comfortably and did not know we were there.  You must also realize that IF your mother does not pass shortly, are you equipped to handle her hygiene needs?  some people can be on hospice for quite some time so unless you are prepared to handle all those hygienic needs, it would be easier to let her where she is.  IF she is not in pain (also, do you have the capability to administer pain meds), I would say leave her there.  I think we all want to ease OUR pain of leaving them in a place away from home, but for them they don't know any difference.  Its our pain that we want comfort for.    I am sure that when the time comes or gets close, the nursing facility will allow you to come in and stay with her for as long as you need to (of course with full virus gear on).  My father passed 3 hours after we left.  Every situation of passing is difficult, regardless of the time or situation, but if your mother is not aware of anything, don't add stress on her body by moving her to just make you feel better.  I don't want this to sound harsh, but what would happen if she passes in route to your house? Only God knows when our time is up, ask to sit with her at the nursing home when its close.  Wishing you luck and sorry there is such a thing as dementia.

Hello Mikersgirl, Your post could not be more timely. My 85 year old mother has been in assisted living in another state for seven years due to Parkinson's and other age related issues. Her doctor told me today she is nearing the end and asked my permission to order a hospice evaluation to begin receiving hospice care. I am in the same boat as you, debating whether to leave her where she is or try to move her halfway across the country to a place near me. My heart says bring her closer to me, my mind says she is better off where she is. I was supposed to visit her in May but that got cancelled due to COVID, and her place in a hard hit state is not yet allowing visitors. All I can do is a very infrequent Facetime courtesy of an aide's iPad. I stumbled upon this forum thanks to Google, and it has helped me accept that she is better off staying put. I hope they will at least allow me to visit in her final days. It is such a difficult and unprecedented time for so many families. Whatever choice you make, I wish you and your Mom peace.

When my husband (74) was in the middle of a long stint in a “rehabilitation snf” they shut down visitation. He couldn’t talk on the phone or participate in video chat so I was completely dependent on the over worked caregivers to keep me posted on how he was doing. They dismissed him and lied to me that he was an “easy transfer” when I picked him up it took three people to get him in the car. I was livid. But at least I could look after him.

Within a few days he was back in hospital where I could not go, then back to another SNF for more “rehab”. At that time I was not aware of just how bad his health was. When he arrived at the SNF they put him on 14 day quarantine. Even though he had been tested for the virus and was clear of it. Which once again put me in a position of being unable to even SEE him because they wouldn’t allow him out of his room. After 5 days I brought him home. He wouldn’t eat, take meds, and barely took any fluids.

Within a few days he was back in the hospital again. They wanted him to be discharged after a few days to another nursing facility. I said No I’m carrying him home. We set up hospice and brought in the hospital bed, lift, oxygen etc.
By that time I realized that he didn’t have much time left. I told him he never had to go to the hospital or skilled nursing facility again and he didn’t have to do anything he didn't want to. He said Yes! And then smiled his last smile.

You don’t live long when you don’t eat or drink anything. He died in less than two weeks. That was May 21, 2020. I was with him holding his hand when he passed. Hospice was such a blessing to us. I don’t regret bringing him home for his last days because I know he was comfortable, cared for and felt loved. Do what you feel you should, but I’ll bet your mom had rather be home with you.

Imho, your mother would be too confused, not to mention the hardship of a potential move, e.g. let her remain at the facility.

I have several things to tell you to think about. First, did she at any time express her feelings to you as to where she wanted to be when she dies. You should honor that request if there was one. If not, and she has advanced dementia, I don't think it will matter here or there as she most likely does not realize what is happening. I think the law says if she is dying, you can be with her. Is there some way you could do that - perhaps stay with her where she is? I have a feeling this will solve itself. Do not feel guilty - just happy you had a loving relationship with her in the past.

I would bring her home.

Bring her home and hire the necessary care she needs to pass with dignity and I believe that is at home...just went through this with my wife,

My heart is breaking for you. What a difficult decision!
There are so many things to consider. Can you provide around the clock care? Can you have hospice care at home? Can you handle if someone brings COVID into your home to her? Can you bear to be separated from her during her final days/weeks/months? Is mom at a point where she would be aware that there has been a change in her location and routine?
Look at all of the pros and cons and remember that you have to make the decision you can live with. There are no do-overs. No chance to go back and play out the other option. There is no absolute right or wrong answer. Neither option is easy (being distanced vs providing daily care). If your pro and con list is fairly equal, let your heart break the tie.
Prayers for you and your family, my friend. Praying for wisdom to make your decision and for peace with consequences of that decision.

The answer to this is different for everyone. My father just passed at his facility without any family present; although he had been declining for years, he had a sudden event and was gone. Prior to COVID, I saw him nearly every day, but I know my limitations and his physical care required more than I knew I could provide. Had his decline continued I could have been with him at a hospice facility or for end of life care but I too live in a lock down state and hadn’t physically touched him in months. Hospice provided the support to both of us, as well as his care givers at his skilled nursing that he recognized and was comfortable around. Whatever is least disruptive to her, but provides emotional support without regret for you, is the goal to strive toward. Toward the end she will not know whether she is “at home” or in the place she’s lived for 5 years. It is such a hard, emotional event to get through, if you can be present without all the moving it will be easier on you. Maybe her memory care has an available room where you and she could be together?

Are you already at home all day and able to provide care for her? Would you have any help from other family members.

If it is possible, bring her home. But ask what they do for her on a daily basis first. Can she get up? Can she walk? Will you be changing diapers all day. Can you do all that will be required? If you can't and you cannot afford in home care, you may find yourself having to take her back. Ask social worker at the facility what kind of help you can get - hospice does come to the home - and then evaluate.

These are hard times, especially for those who are sick, elderly, or on a decline. They may tell you about visiting at end of life, but that can change, too. Some facilities have no visits at all, even at end of life.

My mom passed away March 31st. She had Parkinson’s And waS living in memory care and had been on hospice for a little over 2 years. It can be very hard to predict when someone will die. I am surprised she stayed with us for as long as she did. Once hospice said she was actively in the dying stage then I was able to visit her prior to her passing. I got to say my goodbyes then and told her it was okay to let go. She died a few days later.
i am glad I let my mom die in the memory care and not bring her home as she was so well taken care of there. Care that would not have been feasible for me to provide. You have to think about how much care they require and can you provide that care?
Best wishes.

Sorry, but as a daughter that has always been close to your mom. You should have had her out a few months ago.
A good rule of thumb is adk yourself what you would want.

My 96 yr old Dad wants to be in his own home to die.

Dear Mikersgirl,

I went through the same pain as you two months ago. My mother was in a nursing home and contracted the covid virus. She had late stage dementia, could not communicate. She had a fever and was not eating or drinking, needed oxygen and was becoming weaker. I was getting daily calls with updates and knew she would not get better. She was fighting and her body was getting so tired and weak. 
 
I too thought of taking her home wanting to be with her through all this. I knew I couldn’t take care of her as the nursing home could. They had all the equipment, nurses and doctors. My mom needed a lot of care. I also knew the move would be very upsetting for her. She was used to her surrounding and familiar with the staff and their voices. This did hurt very much, in my heart I wanted to be with her, but thinking logically (which is very difficult), I knew this was the best for her keeping her comfortable as possible.
 
The nursing home did let me come in when they knew she was not doing well. They said if I wanted to see her, that day was the day. I could go in with masks/gloves/protection and stay for 15 minutes.
I did go and see her and she was so weak but looked very comfortable. She responded to my voice, opened her eyes and tried to talk, but couldn’t because of her breathing difficulties.
 
I was able to talk to her and touch her and spend some time. I hope it gave her some comfort knowing I was there. And hopefully even though I left, she may think I was still there. 
 
It is very painful not being there, but I feel my mother did not have a sense of time and how long I was away from her.  She was very sick and weak, so mostly she was sleeping. She did pass away four days later. And though I had the opportunity to see her, it is still painful not being there every day by her side while she was sick and when she passed.
 
I know it is a personal choice to decide whether to take your mother home and only you can make the decision. I only can say what was best for me and my mother.
 
I know how painful this is. I didn’t see my mother in two months prior to her passing and she has been gone for two months. I think no matter what decision you make; it will hurt for some time. Our mothers are very special and a big part of our lives.
 
I am so sorry and wish you much strength in making your decision. My only advice is asking the facility for a visit.
 
Please take care.

I do not have an answer for you, only blessings that whatever you choose to do will be best for Mom as well as you.  Do what is right in your heart.
I do have a question, you mention a device which allows you to peek in on her.
Can you share what that is?   I have my 89 year old Dad with dementia in a rehabilitation facility after falling several times and than breaking his hip AND Mom (86) at home in her apartment.   Even though I am only 3 miles from Mom, it would be nice to be able to "peek in" on her, especially when she gets herself so worked up about not being able to get a hold of Dad on the phone.

Thank you and God Bless you

This is a tough decision, however, with her catheter, and not eating, and with dementia I am guessing here but I don't think she knows what is going on and has started the dying process. While you may feel you are deserting her in her time of need, you need to be prepared if you were to move her home, the extreme emotional turmoil you will inflict upon yourself. Watching a loved on deteriorate and die is a horrible experience. I have been on both sides of this situation and knowing what I know now, I should have considered what was best for the person and not allowed my emotional feelings for bringing that person home as I was unable to acquire the necessary skilled workers without further jeopardizing my family member. Sometimes a move is worse on the person and does more harm than good. While this is my experience, you need to do what you feel is right for your mom, not for your emotions.
Best wishes

Good morning

please if you can bring her home and do your best to take care of her yourself .. it won’t be easy but your mom needs to feel that love right now.. unfortunately I lost my aunt in a nursing home in May and I truly believe part of her decline was the family not visiting because we were there all the time ..she too was late stage dementia.. could not talk walk eat for herself go to bathroom .. I also think because of her condition the facility paid less attention to her because she could not complain or tell us anything even if and when they did do Zoom .. so please give her the respect dignity and love that she needs right now .. if it’s her time let it be with her family and not some uncaring facility and staff

🙏🏼🙏🏼🙏🏼🙏🏼

If she’s sleeping 20+ hours, not eating and is catheterized it sounds as tho she is in the actively dying stage. My MIL was like this for three days before she passed. We had in home hospice. It was wonderful. We had many family members, friends and clergy stop in during her last days. She died peacefully and we have absolutely no regrets and have peace that we did exactly what she would have wanted.

Imagine you in her position snd ask what would I need.

I would bring her home. No better place to be then home and with family. Hospice could come to your home.

I am in a similar situation, and realized that my mother is doing fine without me (she's tougher than I thought). It was a shocking realization that my visits were as much for me as for her. You are not abandoning your mother. It sounds like she is in a place that is taking good care of her. She may be safer there than she would be with you in your home. You will be able to visit when needed. If you take her out of the facility it may be difficult to put her back in, if that is needed (what would happen if you got sick with COVID-19?).

If she has not tested positive, and you and yours are not compromised, I would bring her home. As another poster stated, the reaction to COVID is more the issue than the virus itself. My mother and I were on either side of my grandmother as she passed on and, I must say, we were very blessed. I kept my promise to her that she would not be alone and I held her hand as she went home. I believe that you should bring your mother home and do the same. If she is late stage, it will make no difference to her, but it will mean the world to you.

Definitely "let it be"....if she is declining food and sleeping more, you will make her much more confused if she comes home...what do they consider "Actively dying?" It seems like they should have you visiting now at the very least...you should speak to them about it.

Dementia patients lose ground when big changes are made. I have debated this also and decided to just let my mom stay safe where she is. My mom stated she was lonely when she lived with my brother , in her own apartment and now in memory care. Nothing cures the mental issues associated with Dementia. Your mom is safe and has staff around 24/7.

I'm contemplating bringing my mother home. Also has dementia. They need in-person visits, but that won't happen for a long time the way things are going. It's sad. It's as if the facility doesn't care about that part of the virus. I don't know if I can live with myself if she dies alone like that. But, truthfully, I don't know if I could care for her either.

It is not the COVID, it is peoples' reaction to the COVID. Bring her home. Better for all to be happy for a short time.

As long as you're confident the facility is meeting your mother's physical comfort needs well, I really wouldn't move her. I think you're right, that the change - not to mention the upheaval of the move itself - would be hard on her.

I should work with hospice and the facility and see if you can negotiate your way onto her care team. They will be adopting PPE and other infection control measures; perhaps you could ask to undertake training in compliance so that you can be present for your mother.

Meanwhile, you're still able to monitor her daily? I appreciate your longing to be there, but if she is mainly sleeping and doesn't seem distressed I should let that be a consolation. I'm so sorry for what you're going through.

It is a real problem. Infection control - getting through the pandemic with the least possible loss of life and long-term damage - has to be implemented on a population level. But we aren't populations, we're individuals, and what's right for the population can be very hard on people. I'm not suggesting there is a solution, mind.

Bring her home. ❤️

Dear Mikersgirl,
My situation is quite similar to what you are experiencing. My mom is 95 and is in the late stages of Alzheimer's as well and had been living in an AL facility since the end of February 2015. My mom had been doing pretty well until the pandemic when her AL facility was running rampant with the virus and all the residents had to stay in their rooms. I felt terrible that she was alone with nothing to do and probably wasn't able to fully understand what was going on. We did try to do Facetime with her but, once she became so ill she wasn't able to get to her iPad in the living room while she was in bed due to weakness. After being in the hospital for 4 days because of severe dehydration along with contracting COVID-19, she was sent to a rehab facility for three weeks. I didn't have the option to have her in our home. Actually, it isn't even our home as we are renters plus the fact I'm taking care of our aging Dachshund who is almost completely deaf and has developed new "barking" behaviors which would not work for my mom even though she loves her. So since I refused to take her back to the COVID laden facility, we found one facility that would take her as long as she tested negative and was able to get her an apartment in the memory care unit with a window so we could see her. She too had stopped eating and was sleeping more. I'm her only child and have always been extremely close to her just like you mentioned in your post. While she was in rehab, I called hospice because they had taken care of my dad briefly before he died in 2004. She still wasn't qualified but, at the end of her stay she had lost 20 pounds and still wasn't eating. Hospice then said they would be able to take her on when she was released to the new facility.
I am at peace with the fact she is getting more care at the new facility along with hospice being involved too. But, especially knowing that if there comes a point where she really is at the end, that I will be allowed into the facility to be with her as now they have their first two cases and my mom is confined once again to her apartment. Since April, there have been at least four times that I thought she would pass away and already had contacted the mortuary as well as the cemetery to do some preliminary paperwork. Today, the hospice nurse called and said she is doing well and has started to eat a little more. Also, when she first moved there on May 19th she was being combative and uncooperative. The hospice doctor recommended a very low dosage of something that would take the edge off as well as help her sleep throughout the night since she was falling in the middle of the night - we suspect she was trying to get up to go to the bathroom as she would never push the pendant button. Normal nighttime sleep did wonders and now she is awake when she should be in the mornings instead of sleeping more or at odd hours. She is also in better spirits. That being said, you never know how long they actually have so if you do decide to bring her home with you just like "lealonnie1" said it can be a lengthier process than what you might think. Also, your mom might be a stronger person than you might think just like my mom. I hope you find the right solution/answer to your dilemma with your mom and peace for yourself. Do take care and let us know how things are going!

I sure can relate to your situation. I'm wondering the same thing. My LO is also on hospice, but, is still eating and has good vitals. She's mainly bedbound and not very aware. Do you have anyone to help you around the clock? Are you set up for the care, assuming she's bedbound? If we knew if it would be a week, a month or even a year, it would help. It's just heartbreaking. I'm so torn. Please post about what you do. I'm very interested.

It's hard to say what's 'best' for your mom, as nobody can predict such a thing. Keep in mind if you bring her home that the dying process can last for a year or more. Nobody can accurately predict that either, so you'd need to be prepared for a long and perhaps difficult road with her at home. Are you ready for that? If you are able to visit whenever you'd like with her in hospice care, that may be a good alternative for you, I don't know.

When my dad was dying, he lived in Assisted Living with my mother, his wife of 68 years. I may have taken him home had he not been there with my mother; but he did have her there with him, so I didn't. For me, it was very very difficult to witness my father struggle to breathe at the end, and to get agitated and require medication from hospice, etc. What saved me was the ability to go home and decompress, you know? I don't think I could have gone through the trauma of watching him pass in my home.

I know how hard this whole process is, and I am sending you a hug and a prayer for peace. Whatever you decide to do, know in your heart it's the right decision. I hope your dear mom has a smooth and swift transition to her next stage of eternal life.