My father passed away in June at the age of 82. He had been ill for about six weeks and in helping him through the process of choosing the right path with his health, taking care of him during his last weeks, and in dealing with the family and financial issues that came up after his death, I realized in hindsight that I received a very important education that could help some of our clients who will be dealing with similar challenges around the process of dying in the future.
First some background and history leading up to his last illness. Over the last twenty years my father has dealt with heart disease, hypertension and diabetes, none of which he took particularly great care of. The complications of those diseases finally got the better of him in May and June, when his kidneys and heart gave out.
Lesson # 1: Pay attention to the warning signs in your aging parent.Notwithstanding his various health issues, my father lived a vigorous life. He did everything he wanted to do. All was well when I visited with him at the end of March, although he had fallen down two or three times in recent months. These falls never resulted in any broken bones, but that was probably due to luck more than anything else. He chalked those episodes up to tripping over things in his way, and having his ‘leg fall asleep’ when he got up from his chair. Earlier this year, my sister had also told me about several times when he had fallen asleep with something cooking on the stove that he had forgotten about, and would have resulted in a fire had she not caught them.
With all his ailments, he had a pill regimen that would choke a horse. Something like 25 pills a day. My sister had put herself in charge of getting him to take his pills, which had become an ongoing war. He almost never wanted to take them because he thought they made his stomach hurt.
She constantly warned me that he was going downhill, but every time I saw him or spoke to him on the phone, he put on his best face and made it easy for me to think everything was fine and that my sister was blowing things out of proportion. The truth is that I probably really didn’t want to see how bad he was.
My last ‘normal’ visit with him was on March 31st. He taught me to play bocce ball before I started playing for the first time on a league team. In recent years he had become quite a celebrity in his local area bocce leagues. He couldn’t have his kid looking bad, right? I marveled at how he could throw the ball with his eyes closed and it would end up right where he wanted it. Everything still looked good to me, health-wise. At least that’s what I told myself.
When I met him for lunch a month later, I was shocked to see that he had lost twenty pounds and was now walking slowly and taking those tiny ‘old man’ steps, needing assistance just to step up the curb. What a shock that was. How could this have happened, I thought? Answer: I hadn’t heeded the warning signs that had been flashing for months.
Lesson #2: It’s their life. A person’s response to their own health problems is theirs alone to make.Ten years ago, my dad was told by his doctors that he had five years before his diabetes would cause kidney failure and require him to go on dialysis. He was adamantly opposed to dialysis and said over and over that when that time came, he just wanted to die. We three children cringed at that thought and prayed that our powers of persuasion would be sufficient to change his mind, when the time came.
By early May, that time had come. His kidney function had dropped to 14% of normal, a level where dialysis begins to be urgently needed. As I was the child who had the most sway with him, I was appointed to broach the topic with him. I had done some online research into dialysis and had learned that there were newer methods that he could do from the comfort of his own home. He could even do it while he was asleep, so it would hardly impact his daily life at all.
I decided to approach ‘talking some sense into him’ by calling him and asking him to simply meet with a kidney doctor to look into the options he had. When I asked him, he was quiet for a long time, then sighed and said, “Okay.” When he hung up the phone, he said to my sister, “I don’t get why he’s pushing me on this. He’s religious; I thought he of all people would understand.”
So, the four of us went to the kidney doctor together on May 7th. The doctor spent over an hour with us, explaining my father’s various dialysis options, and she also added that for some patients, dialysis really didn’t increase their longevity at all because of their other health problems. She then went on to describe how Hospice can be called in for any patients who are certified to be within six months of death, and described how their mission is to provide palliative care to assure a patient’s total comfort throughout the dying process.
In retrospect, this was a nice way of telling him that his other health problems were most likely still going to get him. But we three children didn’t really want to hear this so we let that crucial advice go past us.
My father mulled it all over for the next few days, but a bout of severe stomach pain early in the morning on Mother’s Day caused him to announce that he had made his decision: he wanted Hospice.
Lesson #3: Be sure the family has fully discussed their feelings and can agree on the course of treatment.By this time it was beginning to dawn on me that this was his decision alone to make and the best way for the rest of us to honor him was to support and get behind his decision. After some discussion, it appeared that we three kids were in full agreement about this. However, I later discovered to my horror that we kids were not of one mind after all, and this failure ultimately led to some very undesirable results that negatively impacted our family unity after my dad had passed away.
Lesson #4: You may have far less time than you imagine left with your loved one. It’s difficult to adequately prepare for what you may be required to endure.A scant six weeks after Mother’s Day, he was gone. The process was so swift that it took our breath away. We were sure that we had several months left with him, but we were wrong.
The first major change was that he no longer wanted to eat anything except shrimp and lobster. He literally could not stand the smell of meat cooking without becoming nauseous, so from then on, nobody in the house ate meat for the duration of his illness. Then he needed a walker to get around. Soon we needed handles installed in the bathroom and shower so he could support himself. Then he needed a shower chair because he could no longer stand to take a shower. A few days later he fell down in the bathroom and was unable to get up, so that was the end of him going to the bathroom by himself. And so it went, in a whirlwind of rapid daily changes and loss of his abilities to function on his own. We did our best to preserve his dignity but it was a very difficult challenge for everyone.
Throughout the process, the Hospice people were coming to visit him and helping all of us understand what to expect and how to deal with the rapid changes we were experiencing. During this period, I was visiting him every few days bringing him his shrimp and lobster, then every other day, and then, in early June, coming every day. By June 14th, things looked sufficiently bad that I decided to come and stay with him for the duration, which we all thought was just two or three days away at best.
Lesson #5: Put your remaining time with your loved one to its best possible use.The next five days living with and taking care of him were some of the sweetest experiences I have ever had. He was rapidly getting worse but he was so appreciative of all of us being there with him. He worked hard to reassure us and make sure that we were okay. Mostly he did that through his humor, and laugh we did. A lot.
I consciously took full advantage of this remaining time with him to tell him all the reasons that I loved him. I shared with him all the things I appreciated about him as a person and a father. I spilled my guts about all the things I regretted. The things I wished I had said or done differently, and apologized again for any hurts I might have caused him. He also told me he was sorry for a couple of episodes when he hit me as a teenager, which I assured him I had deserved and harbored no ill will over. I asked him to tell me one last time all of my favorite stories that I loved hearing him tell throughout my life. My goal was to have zero incompletions with him, and I am so glad now that I did this. It is such a relief not to have anything that I wish I had told him, but hadn’t, and to have given him the same opportunity with me.
Lesson #6: Be sure to put your loved one’s needs first during the dying process.Throughout this time, he was having a lot of visitors. There were times when he was in his recliner or hospital bed trying to rest and we had upwards of 18 family members in the room with him. In retrospect, the noise level was far too high for him. We somehow thought it was comforting for him to be surrounded by his loving family, but one day the Hospice nurse came over, and seeing all those people there she laid down the law: No more visitors. Once they have seen him once and said their goodbyes, they were NOT allowed back in again. All of a sudden, I got it. I imagined myself sick with the worst flu I had ever had. Would I want a bunch of people sitting around me in bed, laughing and talking and stopping me from getting the rest I needed? Ugh. Sorry Pops.
However, this new regime wasn’t exactly easy to implement with the family. In fact, it was completely foreign to all of us. We’re Italian and getting together to support each other during the hard times is what we do! You should see us when one of us is in the hospital. We literally take over the waiting room like an occupying force. So it was really hard to keep everyone away from him. We had to adopt a sort of police mentality, managing the crowd in a firm but friendly way.
Lesson #7: Do your best to take care of yourself during this trying period.It became increasingly difficult for us to handle visitors too, particularly after he became permanently unconscious. We loved seeing them and so appreciated feeling their love and concern for us, but at the same time, we were beginning to feel like zombies. It was reassuring to be around the normal banter and conversation that we were used to, but it was a stretch for us to really participate in normal conversations with them and we felt guilty that we were really letting them all down with our far off glazed looks and strange behavior. By now we were all completely exhausted from lack of sleep and the severe emotional strain we were all under. We were in a constant state of trying hard to be prepared for what we knew was coming, but hoping we could have another day, or at least a few more precious hours, with him.
Lesson #8: Get as much help as you can afford.In our rapidly decaying state, we found it surprisingly hard to carry on normal conversations. We were feeling like rubber bands stretched to their breaking points. All of our normal emotional and physical resilience and ability to roll with the usual punches of life was now gone. Yet, we still had to be there to care for our father, buoy each other up, and visit with our amazing extended family who were coming to support us. The longer this went on, the more difficult it became to give when your entire being just wants, or more accurately, needs, to receive.
One of the best things we did was hire someone to help care for our father during his last two weeks. We were fortunate to have a wonderful and loving cousin with prior experience caring for others who had gone through the dying process. She was really instrumental and incredibly valuable in helping us get through our own process with our dad. We also relied on the valuable help we received from the nurses, social workers and chaplain at Hospice. They were great, and they were always just a phone call away, 24/7.
Lesson # 9: Don’t settle for anything less than complete comfort and serenity in your loved one as they are dying. All hospice agencies are apparently NOT alike!When my dad finally slipped into a permanent state of unconsciousness on June 19th, all the sweetness of our experience with him ended. What followed was a hellish five day ordeal where we were forced to watch our dad suffer far more than we had been prepared for. We established round the clock shifts at his bedside, administering his pain and anti-anxiety medications and making certain that he did not die without being surrounded by his loving family holding his hands and urging him on into to the next life.
But his suffering during this period was so profoundly great that I wanted more than anything to just put an end to it all. I felt sure that I would come away with Post Traumatic Stress Disorder from the experience, but got through by continuing to reassure myself that this was God’s will and that it would all be over in HIS time.
You can imagine my horror and frustration when I later learned from a wonderful friend who knows about these issues, that there are differences between the levels of care provided by different Hospice agencies, and that the suffering my father experienced was completely preventable and unnecessary. Many of the most powerful palliative drugs available for dying patients were not even offered to us, even though Hospice knew he was still suffering. Because of our lack of experience, we simply didn’t know enough to demand them, and this is the most anguishing thing for me in looking back on everything that happened during my father’s death.
If your dying loved one appears the slightest bit uncomfortable, as evidenced through grimacing, furrowed brows, frowning, moaning, labored breathing, restlessness, or any other sign that is worrisome, we can and should demand that they be made more comfortable by the Hospice people. Do not accept the slightest bit of discomfort for your loved one!
Lesson #10: All Neptune Societies aren’t alike either!My dad said he wanted to be cremated. So I went online in advance to look into the Neptune Society, a well-known provider of low cost cremations. On their site they ask you to enter in your zip code so they can direct you to the proper Neptune Society service provider in your geographic area. I entered in my father’s Rio Vista zip code and got the number for the Sacramento Nautilus Society. They assured me that they were a division of Neptune and quoted me a total cost of $995 for the whole process, including transporting my father’s body to the morgue. They told me that when he passed, the Hospice nurse who came out to pronounce him dead would call them on my behalf.
However, on that Sunday morning when the nurse actually did come, unbeknownst to me she ended up calling a different Neptune Society, this one in Stockton. The next morning when the morgue called me, they told me the cost was going to be $2300 for the cremation process. When I objected, they told me that the agency I had spoken with in Sacramento was different than them, and had a different price list. If I wanted to move my dad to Sacramento, I would need to pay Stockton $395 for transporting him from Rio Vista the day before.
With a little negotiation, Stockton ultimately reduced their total package price to $1200, thus avoiding the need to transfer him to Sacramento. Bottom line: know who you are dealing with and be sure the right agency is contacted. Also shop around for prices in advance of your need. If you can’t do it yourself because you are too distraught to think objectively, get a different family member to represent you. As macabre as it seems (and it really was), these morgues and mortuaries can and do take advantage of families pretty regularly.
Lesson #11: Be as transparent about your estate plans as possible before you die,especially if you are leaving more money to some family members than others. Discuss who is to be the executor and successor trustee with your heirs. Explain why you made the decisions you did, and provide an opportunity for your heirs to ask questions in advance so they understand your thought process. They may not agree with your choices and that’s okay, it’s not their money. However by so doing, you will avoid so many difficulties and conflicts between your heirs after you are gone. In our case, my father’s choice to leave a sum of money to one of his three children, without the other two children knowing about it in advance or understanding his reasons for doing so, led to a large, unnecessary and unwelcome rift between some of his children. This rift will be very difficult to recover from. What parent would knowingly want to set their children up to experience bitterness and animosity when they could be unified in love?
I hope you find my experiences helpful and that they provide new opportunities for understanding the possibilities and potential pitfalls that we all will inevitably experience as we lose loved ones in our families.
Our Living in Possibility™process creates unbelievable outcomes around the combination of wealth and family. It is designed to help families sidestep the problems my family encountered by building trust and communication between family members, and preparing heirs for the responsibilities they will have after the wealth gets transferred to the next generation.
Unfortunately, this is not something that is easy to accomplish in our own families, on our own. What does work well is to bring in an outside professional who can remain objective and provide guidance and mentorship to the family, before it is too late. I have personally witnessed the difference between families that are confident and prepared for wealth to transfer to the heirs and those that are woefully unprepared. And that difference is night and day, both in the experience the family has, as well as in the end result.
We’d love to know if this was helpful to you, and invite you to share your own experiences and insights into this topic, so that our readers can benefit further from the continued discussion.