Covid and Dementia and what's left?

John2.0.1

I had a call from the nursing home. Mom is testing positive for Covid again. She has had it twice and now they think it's a 3rd time. She is vaccinated. At first we though it was just that she's still testing positive from when she had Covid in December but she's now not eating or drinking well and she sleeps most of the time.

Mom's dementia is really bad. She can't communicate much at all. She knows me I think.

She's miserable when she can think. For 2 years she has said that she wished she had died when my dad died. She has Parkinson's so she is 100% dependent on others physically. She can't even sit up in bed without help. I know that she'd rather that it was over with.

Covid is in the nursing home. I know that there are other cases so I really don't want to visit. If I did I'd have to then isolate at mom's unoccupied house for a week for fear of getting it and giving it to my family. If she was in her right mind she'd tell me to stay away.

If mom isn't drinking better tomorrow they are thinking of putting her on an IV at the nursing home but if it doesn't improve they would send her to the hospital. Mom's is DNR. I'm her HCP and DPOA.

What would you do if you were in this situation? She is miserable and only her total lack of understanding keeps her from becoming more miserable. Does it make sense to prolong something knowing she'd prefer to just go? She's 86.

M1

John, first of all I’m so sorry. But second: why an IV? What’s the point? Why move her at all? Is hospice on board? Are they not willing to just let her stay where she is? Sounds like it is definitely time for comfort measures. I would call for hospice right away.

dayn2nite2

Why are they wanting to do IV and/or send to hospital if she is DNR?  Is she on hospice?  Does this facility just have a high intervention philosophy?  Are they willing to take care of her until her eventual death or do they just ship everyone who's failing to the hospital?

If she isn't on hospice, can she be evaluated by them for acceptance?  She shouldn't be put on an IV and definitely doesn't need a hospital.  She is probably in her final days, why would they be so zealously trying to keep her alive?

Stuck in the middle

I agree.  It's time to let her go.  No IV, no hospital.  That's what I would want you to do for me if I were in her position.

Tfreedz

I agree with everyone else about hospice and comfort care. 

Maybe the staff can set up a FaceTime or zoom visit for you, that way she could hear your voice and you could see her and remain covid free?

Joydean

 I completely agree with all the other members. No IV! I know that’s what I would want. Why would they want to put your mom in more pain. 

Battlebuddy

Can you call for a Hospice evaluation? Most Memory Cares have a hospice they work with, but I’m pretty sure you can just call. No IV . It will just drag things out

The4thOne

John, I hear you looking to be validated in what you know needs to be done.  It is OK. You have laid out your case, and the solicitation for thoughts is your sense of guilt that you, too, know what needs to be done.  Take the counsel of your fellow caregivers and move forward with the case you have clearly made.  It is OK, and as you and others have shared, it is time.  You have permission to honor Mom's DNR provision.  It is OK.

harshedbuzz

John-

I am sorry you and your mom are living this nightmare. Was mom tested with a PCR? Sometimes a person can continue to test positive with a PCR for a month or more. It could be the virus is slow to clear as opposed to a new infection given a positive in December. 

In your shoes, I would be bringing in hospice and honoring the intention of mom's DNR. I would be wary of the motives behind IV hydration. State DOH are collecting data from facilities on number of COVID cases/deaths and may be trying to avoid your mom being included under that umbrella. 

Wishing you peace at this difficult time.

HB

Quilting brings calm

I agree with everyone’s thoughts/ but I wonder if the facility’s hands are tied?  DNR means do not resuscitate.  There is a document ( and it might be that one) where the wishes towards a ventilator or feeding tube are stated.  I don’t know that an IV or hospital stay would fall under either document except in terms of religion. ( sone religions refuse transfusions). The facility may be required by law to treat.  Hospice being involved would allow comfort care rather than treatment.

My step dad tested positive for covid last month.  I asked the director if he would need a negative test to get out of isolation.  He said no, because step dad could test positive for months. They use the rapid tests now. 

JJ401

If you have her health care POA, here at least, you can refuse the IV. In my experience some docs do not know enough is enough. I have refused futile treatment twice, once for my mom and once for DH#1.

It is extremely hard, in my experience to say no, even if the treatment proposed is futile, but it is why Mom gave you the POA. Use it to do what Mom would want you to do. Your mom trusts you to fulfill her wishes.

John2.0.1

Thanks everyone for your thoughts.

The document that makes me HCP talks about her wishes. I'd guess a lot of this is boilerplate.

Most relevant is:

"If at such time the situation should arise in which there is no reasonable expectation of my recovery from extreme physical or mental disability or disease, I direct that I be allowed to die with dignity, and not be kept alive by extreme or heroic measures involving either medications or artificial life support systems. I also desire that, under such circumstances, appropriate "do not resuscitate" or similar orders be entered.

I do not fear death itself as much as the indignities of deterioration, dependence and hopeless pain. I therefore ask that medication be mercifully administered to me to alleviate pain and suffering, even if such measures may shorten my remaining life"

"It is my intention that my agent make such decisions as my agent would perceive to be in accordance with my wishes however expressed but if my agent cannot determine my wishes, my agent is fully empowered to make such decision as my agent shall deem in my best interests."

"To give or withhold consent to any medical procedure, test or treatment, even though such might be against conventional medical advice, and to arrange for medical treatment of any kind even though such may lead to permanent physical damage or addiction or hasten my death."

I know that she does not want to live this way. Before her mental capacity took the steep nosedive that it did beginning July 2021, she told me multiple times that she did not want to live any more.

As for Covid, I don't know if she has it or not. She has taken 2 rapid tests that came back positive and a PCR test that was inconclusive. They are doing another PCR test. I don't know if her lack of eating and drinking and her sleeping all the time is because of Covid or independent of Covid.

I just know that she is miserable and would not want to continue to live this way.

Jimbob59

My mother died at home on 1/1/22 on hospice I signed the DNR and there was no IV after she stopped eating then drinking, once she stopped drinking the time she passed was 7 days. She was only a hospice patient for 10 days I wish I would have had them on board a lot sooner.

Tfreedz

Jimbob,

I’m so sorry to hear about your mom. Please take comfort in knowing that you did your best for her last days and that she is at rest now. Thank you for sharing your experience, I’m sure it will help many of us as we travel through this journey. 

John2.0.1

The nursing home called. As mom's HCP they asked if they should send her to the hospital or keep her at the nursing home and make her comfortable. She's not taking fluids, she has been asleep 100% for days and her blood Ox is very low. I had been studying her final wishes in the HCP document and they align with what she has been telling me when she was still able. She would not want to prolong this existence. I told the nursing home to keep her there and keep her comfortable. That means morphine. She probably will not wake up. They say she has one to three days left.

M1

John will be thinking of you; you are doing the right thing.  I'm so sorry if covid keeps you from being there, but hopefully there's mercy in her being asleep.  I constantly anticipate what it will be like when this day comes to our home.

abc123

I think you are doing the right thing John. You are honoring her wishes. You are in my thoughts and prayers.

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John2.0.1

Thanks everyone for your supportive comments. Mom died this evening.

Quilting brings calm

John

I’m sorry for your loss.  You were able to honor your mom’s wishes.  I’m sorry this pandemic made it more difficult for you.  

Tfreedz

Oh John, I am so sorry for your loss. I know it was expected but when it is a reality the pain can be overwhelming. I hope the beautiful memories you have of your mother in earlier years can sustain you through your sorrow. Sending big hugs and warm thoughts your way!

harshedbuzz

I am sorry for your loss.

Deanna_M

John, I am so sorry for the loss of your dear mom.

Neverends

I am  so sorry  for the loss of your mom  John.

dayn2nite2

John, I'm sorry.  If it helps, this is the best possible death scenario for anyone with dementia, to be essentially in a coma and then the body just stops.  Her soul had flown before then.  My mother had a similar death after a cardiac event and I was grateful she was so peaceful.

The4thOne

John, and so it is done.  While you may feel the pain of her death, mourn her transition away from you, but celebrate that it happened according to her wishes, and you honored that.  It is not death, it is obedience to God's will, and manifestation of Mom's final wishes.  What a gift!

John2.0.1

Thanks for everyone's continued support. But neither my mom, dad nor I have ever believed in any theist mythology.

mommyandme (m&m)

I’m so sorry for your pain and loss.  

I was thinking that she might have just turned to actively dying despite Covid.  Her test could’ve been positive due to the other instance instead of a new one and just a coincidence that she decided she was ready to go.  

She was blessed to have you in her corner.  I hope you can find some comfort and peace soon.  

John2.0.1

mommyandme (m&m) wrote:

I’m so sorry for your pain and loss.  

I was thinking that she might have just turned to actively dying despite Covid.  Her test could’ve been positive due to the other instance instead of a new one and just a coincidence that she decided she was ready to go.  

She was blessed to have you in her corner.  I hope you can find some comfort and peace soon.  

Thanks! I have my doubts that she died of Covid. She had just had an asymptonatic case in December and moved to nursing home the day that she'd be considered non-infectious. People can be over Covid but test positive for up to 90 days. I'm inclined to think that she didn't really have Covid for a 3rd time but I don't know. The nursing home never told me if she had been previously tested before this and if she was negative. But my suspicion is that it was just her natural time.

I'm curious what the death certificate says. Not that it will be correct. Since Parkinson's does not actually kill people directly, I'd say that she simply died of old age.