Thank You and an Introduction

I want to start by thanking all of the kind-hearted people who have posted on this board, and especially Sheila for moderating it. Although I have never posted here before, I have found a lot of comfort from reading the posts here and knowing there are people who understand.

My father passed away January 2021. He was diagnosed with Stage IV cancer back in March 2018. I closed my small business to be more available to assist him in October 2018. He lived 45 minutes from me. We went through a progression of him needing more and more assistance. I started by helping him 3-4 days a week and he eventually entered home hospice the evening before Thanksgiving 2020. By that point I was driving back and forth to his home almost every day, sometimes twice. We navigated doctor visits, hospital stays, short term nursing home stays through the early days of Covid until just before the vaccines became available. Every day I worried that I might catch Covid and be the one to kill him.

When he passed, the funeral home allowed us to have a small funeral with a maximum of 15 attendees. I come from a large family. When I called relatives to inform them of his death, I had to either explain why they couldn’t attend or let them know how many people could attend. While making preparations for the funeral, I received a call from the caregiver organization to tell us that one of my father’s caregivers had tested positive for Covid. I scheduled a test for myself. I received a text with my positive test result while waiting in my car outside the funeral home. I waved to my family members as they entered and left. Then I followed them to the cemetery and watched the graveside service from my car. The family had planned a tiny socially distanced meal at my father’s house for after the service. Because of my test result, everyone went straight home instead of attending.

I have been very very busy as the executor of the estate, cleaning out and selling the house, sorting through things, and dealing with all of the financial and legal stuff. Things are starting to slow down a bit and I realize I am still dealing with some emotions. I have processed most of my grief, but I have some anger about the things Covid took away from my father’s final years on the planet. He should have been surrounded by family and friends as often as possible. We are fortunate that he could afford 24/7 caregivers so he could stay home and not disappear forever into an understaffed nursing home with no visitors allowed. (That happened to my uncle.)

A couple months back, I tried to talk to a friend about it. She looked at me and asked “Did you do your best?” It felt very dismissive and I realized she couldn’t really comprehend what I was trying to express.

I thought it might be helpful for me to vent here a little. And maybe I can help someone else going through a similar experience.

Thank you for being here and sharing your stories.

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Wow!!! You’ve stirred such a mix of emotions! How wonderful that you were able to provide such emotional, logistical, practical, and physical support for your dad. But how profoundly painful that covid prevented you from taking your first step in healing, which is the ritual good-bye shared with family, and feeling their support for you. And now, I’m so glad you recognize how important it is to share your loss, your grief, and your anger—and to have peope UNDERSTAND what you’re feeling.

In addition to being able to do that here, to the extent that one can, I’d also consider something in addition—and that is a support group for those who are dealing with loss. Ideal would be a group who have lost a loved one to cancer. I don’t know if there’s a Gilda’s Club in your area. If there is, then check that out. And google to see what you can find in your part of the world. So many support groups meet via zoom these days, and it’s really a blessing. I’m in a caregivers support group at my local Gilda’s Club (now called Red Door Community, as they recently went their independent way), and it’s invaluable. One of our former members is now in a Loss group, and she recently told me that it’s been an amazing experience.

Good luck on your journey of healing—a lot more complicated than it should have been. And thank you for your kind comments!

(((holhealthprac)))

=sheila

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I am so glad you decided to post here.

Yes, we do understand and I have had friends died with Covid, although it was not the cause of death.
Never-the-less, her husband and children were not allowed to be with her. What a terrible situation to
not be able to be with your loved one and give peace and presence as they leave this earth.

My cousin’s mother-in-law (99 years-old at the time) had lived in an assisted living apartment but they were on lockdown for over 9 months. They could only wave at her from the ground of the apartment and speak to her on the phone. All meals were delivered to her apartment and any socializing had ceased. She actually got to the point where she was so depressed that she had lost a lot of weight and wasn’t interacting because she felt there was no hope. My cousin made sure to spring her out of the AS place and she lived with them and celebrated her 100th birthday with siblings, grandchildren and great-grandchildren in attendance. Although they needed to modify their home a bit it was worth it to help her feel connected and have some joy. The MIL did continue to go downhill enough that it was extremely hard to care for her and she went back to the AS facility but it had stopped the severe restrictions and she did live another 3 months with family and friends able to visit. They were such a blessing.

I know you would have wanted that for your dad. I wish there had been some sanity in this nation’s administrators to shelve all the rules especially when it came to end of life. In all honestly, did they think a person would rather be alone at the end? Is that even caring or rational? Try not to be too unhappy with the comment of “Did you do your best?” because it was meant as comfort and I realize you may think it was contrite but we have all been victimized to an extent because life was not allowed to proceed as normal even if there were hospice or funeral situations. I am so sorry for the pain this has caused you. I bet your dad appreciated all you did for him and knew you loved him. I was very grateful that you cared enough to change your life for a season. Now that a year has passed please accept my thankfulness that you cared enough to not run from the challenge. I cared for my dad for 5 years through the ending of his dementia journey. It was rough the last two years but I am so glad I was able to sacrifice and care for him in a respectful way. My sister (who lived 45 minutes from him) would not handle it so I moved from the Midwest to SoCal for that period of time. I lost my husband nearly 5 years before my dad and was caring for them both at the same time until John died.

You are a blessing to your family and you were a blessing to your dad. Thank you for sharing a part of your journey with us. We do understand and care. Please post as often as you life with questions or just comments.

Robyn

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Holhealthprac, so very sorry to hear of your loss and story.

You are not alone. Many people have similar stories. My mother had kidney disease and got to a point where we could not care for her at home any longer. We moved her into AL of her choice on March 3, 2020. The good news is that I called for all my relatives to come see her that weekend as I knew her condition was not good and would not improve. Mom had a great time visiting with everyone.

I received the call on March 25 in the early morning that she was having trouble and I should come be with her. They confirmed my siblings and I could be with her for her last hours. I called them and they all traveled to the facility. Initially they left all of us in after passing their exam and we had to stay in her room. Mom was failing and really not communicating any longer. We kept her as comfortable as possible and decided to send some of us home to get sleep as everyone was exhausted. The facility agreed that some could stay and the rest leaves and come back on a schedule.

We were staying at mom’s house all of 5 minutes from the AL facility. We had no sooner arrived at mom’s when I got a call that the facility would to allow us in until the morning so no shifts. The people there would have to stay all night. I arrived at 7AM and relieved the people that stayed over night and my brother arrived about 10. The office called down and then told us that only 2 people could go in at a time. I went down to complain and ask for cooperation given the situation and while in the midst of that discussion, they informed me that they had changed their rules again and now once we left we could not re-enter. My brother was still with her thankfully. He ended up staying with her until she passed about 6pm but could not leave the room and without support for him.

I was so mad I could barely see straight. The facility would not budge siting COVID protection protocols even though they changed them about 5 times in the 24 hour period. I felt horrible for mom but she was not really aware, but my brother really could have used the support.

We similarly had a 10 person funeral mass and burial. The funeral home attempted to webcast the funeral but could figure out the technical problems so extended family ended up frustrated and confused since it wasn’t working. What a mess.

I too was the executor for the estate and all the COVID restrictions even impacted that. The places we would normally donate items to were closed and not accepting anything, auctioneers were not operating, and the list went on and on. Thankfully, I am almost done, just the IRS to cooperate and then we are done.

Sorry for the long post, but I wanted you to know you are not alone. Losing someone is no fun, but it has been particularly horrible over the past two years.

Don

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Sorry for the long post, but I wanted you to know you are not alone.

What an inhumane situation! At least you can be thankful that your mom was too unaware to experience the deprivation and loneliness that way too many people experienced as they were dying during the earlier phases of covid.

There is no need to apologize for the length of your post. Each of us has a story to tell, to share. And in some ways our many stories have common threads. But in others they are unique. And we can’t share those unique aspects of our experiences if we don’t give ourselves the time to talk about them. They are as meaningful as the more common elements.

Thank you for posting,

=sheila

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Dear Sheila,

Thanks for your reply. I DO feel better after posting a little of my story.

I did get a small good-bye ritual the night of my father’s passing. My father was Catholic and wanted last rites. He chose to pass in the evening while alone with his caregiver. The hospice service helped us locate a priest to come to the home (after midnight) and speak and pray and give absolution. My local family members (brother, sister-in-law, niece, and my fiance) stood around his bed and prayed together. It was a very beautiful and comforting experience. I am so grateful to have that memory since I could not attend the funeral.

The hospice offers a monthly support group on zoom. It doesn’t feel like the right thing for me at this time, but I will consider it if I start to feel stuck. For now, I like the anonymity of this board that allows me to express myself when I feel the need. Writing is therapeutic.

As cancer goes, we have one of the less painful stories. My father had prostrate cancer that had spread into his spine. He lived almost 3 years with the cancer in his spine. He fell multiple times without breaking his back and he passed from kidney failure before experiencing any bone pain. His treatments were Zytiga (a miracle for about 18 months) and some injections at the hospital infusion center. He experienced none of the side effects of chemotherapy or radiation. Considering how far the cancer had spread, he suffered very little. I am very grateful for that. I never had to use the “comfort kit” in the refrigerator.

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Dear Robin,

Thanks for responding and sharing your stories. My uncle is the person who went into a nursing home, was isolated from all of the other residents, and died a week after his nursing home started to allow visitors.

My father was in his home on hospice at the end. It wasn’t necessarily the government legal restrictions that kept family from visiting with him. This was before vaccinations. Most of my family were essential workers and did not want to risk bringing Covid into his house. This was to protect my father and also to protect his caregivers who had families themselves. The family members who lived nearby did stop in and visit with him from the next room. I think he would have received better care in a facility, but I know that being able to see family was more important to him. Out of state family could not visit because they were afraid to travel and due to the quarantine periods.

My Dad’s favorite thing in life was to cook all of the holiday meals. He loved seeing extended family around the table dining together. For his last Thanksgiving and Christmas I scheduled multiple meals at different seating times so the different local family units could visit with him, but he was very frustrated with me that we couldn’t all eat together at the same time in the same room. He knows I did what I could.

As for my friend who asked me if I did my best, I know she meant to comfort me. Thank you for reminding me.

I am blessed that my father’s mind was clear until very close to the end. Twice in his last year he looked at me and said “Thank you for everything”. Now I am crying. And once, he even said, “I’ve been a little difficult, haven’t I?”

As for giving up a few years of my personal life to care for a loved one, it was one of the times in my life where I knew I was exactly where I was supposed to be, doing exactly what I was supposed to do. I have peace in my heart and my soul is happy that I was able to do this. (And thanks to reading TMF boards for years, I was financially able to do it.)

Thank you for caring for your loved ones and sharing your journey.

HHP

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Dear Don,

How heartbreaking and tragic that family arrived expecting to spend your mother’s last minutes together with her and then being told the rules had changed. I am sorry you could not be there. You lost something that can’t be replaced.

I watched a webcast funeral that was held for my Dad’s sister-in-law who died of pancreatic cancer a few months before my father. It was strange. The camera stayed on the altar and I couldn’t see my uncle and cousins at all. The service was very impersonal. It made you realize that seeing family and sharing grief is the most important part of the service.

I experienced a lot of the same executor issues also. The death certificate took 3 weeks. The courthouse had been closed for months so the probate hearing was held on Facetime 10 weeks after my father died. I could not establish an estate account until I had court papers so I had the choice of loaning the estate a lot of money or letting the bills go unpaid. We had the same issues with donation places being closed. We managed to find an estate sale company run by a group of young people who were not afraid of Covid. We didn’t sell much because there was a limit to how many people could be in the house at the same time; people had to make appointments to walk through. I kept some of the nicer things with the idea of donating or selling them some time in the future. The one positive is that it was very easy to sell the house due to people leaving the cities, working from home, and wanting single family homes.

I appreciated your long post. It’s hard to tell a story without one. Thank you sharing your story.

HHP

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I am so grateful that your father, and those of you caring for/about him, had such an “easy” time of things after his cancer had metastasized. Normally, it is the opposite, with severe pain, spinal fractures even without falls…

A beloved uncle of mine is now in hospice care with metastatic pancreatic cancer that includes his spine, and the pain was so intolerable that he is so doped up now that he is unable to interact with anyone. We live on opposite sides of the country, and it’s impossible even to exchange “hello’s” over the phone. He is at home, and his family (3 children and their spouses and adult grandchildren) is with him round the clock. But he sleeps the entire time. At least he’s not suffering.

The last rites that enabled you all to join with your dad and each other in a simple and meaningful ritual—there is poetry to that.

=sheila

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