I wrote this letter to my mom nearly nine years ago. I thought I had lost it in a hard drive crash and just recently recovered it. Momma turned 88 last Tuesday and is doing very well. She has managed to avoid “old folks homes” and lives in her own apartment at my younger brother’s home in Colorado. My dad died of congestive heart failure and myelofibrosis on February 27, 2000, at age 79.
June 2, 2003
I’ve been thinking about you so much since you’ve been here. Yes, I thought about you a lot when you were in Colorado, too. Or in a pickup truck and travel trailer with Poppa. Or living in that incredible home you and he built “on the hill”—El Shadmir. I’m even recalling memories from Colby and the farm.
You know, when Poppa was dying, I remember promising him that we would do everything possible to make sure you were ok. That you would live as good, happy and healthy life as we could possibly manage, and that if you ran out of money, we’d even make sure you get through that. I don’t know how many of the other sibs had a similar conversation and/or commitment, but I think it was most of us. He was just sure no one else knew you well enough—like him—to be up to the job.
Now you don’t easily remember poppa’s dying time, or maybe it’s mixed in with other memories and gets a bit confusing or lost. That makes sense to me. We kids were certainly crazy as we tried to do something we had never done before: help Poppa die at home and in comfort—as he requested. As those days turned into weeks, and then months, that one dying man had worn an entire family to exhaustion. In that process we learned how demanding he could be, and we were able to understand better how much you had deferred to him and his wishes for so many years.
You were with him long before it became obvious that more help was needed as his disease progressed. Just how long did you cover up for him… tried to take care of him by yourself?!
While we cooked, cleaned, visited and made phones calls, you would usually be sitting by his side. You got attention and help then too, because he couldn’t stand to not know you were right there! You watched things that probably didn’t make sense sometimes. We did things for both of you—and especially Poppa—that we had never done before, and that no one had told us how to do, though we’re a pretty darned experienced and intuitive family, so we sometimes “outpro’d” the professionals.
You came to lean on us kids even before Poppa passed. There is no one on this earth who could have been a better companion to him than you. Or so I thought, but then I’ve always held you on a pedestal. Of course now I realize that pedestal was made of chocolate cake, and I love you even more for that—for being a real person and for letting me get to know you more personally the last few weeks.
I want to share some of the things that you may, or may not remember. Please understand that my memory is imperfect and incomplete. There may even be recovered memories—things that never happened, but we remember them anyway. Maybe they happened in another place or time? I don’t know.
We kids started coming to Colby to help you and Poppa more than three years ago—in January, I think. I had noticed on an earlier visit that he needed an electric recliner, as he had become too weak to operate his old one. I was sure I recognized that he was dying because I’ve seen it so often in my friends with AIDS years ago. From there, we kids organized a schedule and system to ensure at least two of us were there at all times for almost three months. It felt like a year.
On Valentine’s Day, three years ago, a couple of weeks before Poppa died, you had some kind of an attack that sort of froze your brain up. I just don’t know any other way to describe it. You were unable to speak, and your face was blank. The doctors didn’t seem to know what had happened either, but they finally settled on calling it an ischemic attack, so they could complete the insurance forms.
We were literally scared nearly to death as the medics rolled you from the house on a stretcher. Poppa got up and held your hand for a moment. I don’t remember what else at that moment myself. It’s all a blur. Maybe someone else can fill in those blanks for all of us.
I think now that I may have seen that look on you before, and it scared me then. I don’t know what year, or how old I was. Maybe 10 or 12? 14?
You had been staying at “the mental health hospital” in Hays. You were there so you could “get better”. We still lived on the farm the night I saw Poppa bring you into the house through the back door. I think someone else there was trying to protect us kids so we wouldn’t see you as he led you back to your bedroom, but I saw your face.
My then childhood-sized brain saw a white faced zombie. I was very scared for you then, too. You know our brains start out small, then grow larger during life until at some point they begin to shrink again and the doctors call this normal, natural process dementia, or if they want more money, maybe even Alzheimers. So I don’t totally trust this memory’s details, but I knew and I know that they had done something horrible to you. And your face was white, and shocked (literally) and you were unable to speak.
Someone told me the hospital in Hays told Poppa he had signed a paper that he agreed not to take you from the hospital unless they said it was OK, and he basically told them to “go to hell, I’m taking her home now!” Or that’s how I recall the explanation I got then. Later I learned that you had been given electro-shock therapy, which in those days was pretty barbaric. I’m not sure what the research shows about any long-term side effects, but I suspect they are sufficient to explain at least some of the difficulty you had with your memory later.
You looked like that the day they took you to the hospital a few days before Poppa finally passed on. We didn’t know what was wrong, and the doctors in Colby didn’t know what was wrong, but it was the straw that broke Poppa’s denial. He was so terrified that one of you might die away from the other. You spent three days in the hospital and rested. You weren’t even sure you wanted to leave the hospital to come home, and who could blame you? It was at that point that your memory of Poppa’s last days start eluding you—or so it seems to me now.
Poppa finally began to let go, and you were in a daze, in shock. I’m not surprised that you don’t remember a lot of it. I think your mind was temporarily shut down. Or at least some parts of it were. Remember when I told you that God had pulled a curtain over some painful memories so you could cope?
The memories are there, and maybe someday the curtain will be opened… even just a bit. In fact, I think I’ve heard things in our conversations lately that indicate you are already beginning to remember more of that time, but then I often tend to see things as I wish they were.
And since we’re supposed to remember our loved ones and friends by their last words, let me share his to me. The last night he was alive, it took several of us to get him out of his recliner chair in the living room and kind of onto his walker. He could not hold himself up so others did that for him. I was in front, steadying the walker until he got as upright as he was going to get. His head turned up so he could look me in the eyes and said: “Thank God you only have to die once.” He may have thought he walked to his room that night, but we basically carried him and his walker.
He stopped breathing in bed the next morning. I had tried to lift him so he could sit up, but he weighed too much for me to lift as dead weight. Those who were at the house joined him in the bedroom and on the bed… talking to him and telling him it was ok to go. You were there holding him as he took his last breath. You seemed so strong. Maybe it was shock. You have a way of being quite “with it” when the situation demands it of you.
It seemed so normal, somehow. Like we all knew what to do. Some of us had made prior arrangements with the funeral home to keep his body most of the day. We created new family rituals the rest of the day. We cleaned his body. There were new, fresh white sheets on the bed that we had purchased a few days earlier and hid in the garage, as we expected his death was imminent. You and some of us kids anointed him with scented oil scented that Diana and Merrilee had made. I expected a ritualistic stroke of oil on his forehead, but you led the way to making sure his entire body was anointed.
If he knew before he died what we had planned, he would have forced us to make some promise to have his body removed immediately… just like he forbid you or any of us to keep any part of his ashes. It all had to go into the ground! Yes, he had some notions that were hard to live with, and he made them clear, didn’t he? He just forgot to tell us what to do with his body right after he died, and that was a blessing because we were able to create an appropriate bier before he was cremated. To this day I would give anything to know what went through the minds of his brothers and sisters as they came to say goodbye!
The body was taken by the undertaker about dusk to be cremated. I know the next few days become a blur, but we have pictures that show some of what we organized while we waited for the cremains to be returned. We held a service at the funeral home, because poppa didn’t want it at the church. I’m not sure I understand the reason for that, but I’ve heard enough to know he had his reasons, and frankly it was an easy choice for me to live with.
You were beautiful. The picture-perfect widow at the service and at the ‘snack and yak’ at the First Baptist Church afterwards. You must have been in a daze. My strongest memory was watching you go up to the front of the chapel at the end of the service, pick up his Coon Creek walnut urn that we kids had built and finished, and carry him out like a baby in your arms down the aisle as we left. It was so profoundly different than anything so many people in Colby or elsewhere were accustomed to seeing. You carried out that part of your role in our family’s mission to be different somehow. To show there is a way for a family to remain close, loving and caring.
That was three years ago, momma. You came to Kansas City with Gordon and Terry and me a few days after the funeral, just to get a break from the place that had worn us all out. Later Terry and I were taking you “home” to Colby where you were going to live for the time being—or so we thought. We would be visiting you there as often as we could. But some of us kids also made a pledge we would never go through what we did for poppa again.
When we arrived in Colby, a plumbing break had caused a lot of water damage to the house you and Poppa lived in, next to the Jones’. Very little damage was done to any of your possessions, but the house was going to be unlivable for quite a while. With very few options, you moved in with Terry and Kathy in Fort Morgan, where you have been living since. You have moved a few times with Terry and Kathy, and there have been changes there—mostly for the better—like a bigger house.
My recollection of the conversations amongst us kids was that you should live with Terry and Kathy for at least a year to help you recover from your loss and to start healing your grief. We’d then re-evaluate the situation periodically to make sure you were getting the kind of care you needed. We did that last Fall when all of us (except Chris and Derrick) met for our family gathering at Fort Morgan. I hope you can remember some of that! It was such a good, familiar time together, even though our family has changed over the years. You read some things to all of us that you had written in your journal.
Gary, Vicki and of course, Poppa have passed on, leaving us fond memories.
You are the last surviving sibling in your family. You tell us kids you think you will probably grow to be quite an old lady, and we all hope that is so. You’ve done so much for each of us. And in return we—the family—want to help you make the very best of your life at all stages of it.
You have finally passed through much of that hardest stage of grieving for the loss of Poppa. In some things he was right; you do need help to live well. And if you don’t need it, you certainly fare better when you have it. Having you here has been one of the greatest blessings of my life. We are a very strange household/family indeed. I often wonder what you’re thinking as you hear the “kids” conversations—and worse yet, mine! LOL.
It will soon be time to gather as a family again and evaluate how things are going and to help you decide what and where the best place for you to live might be. Terry and Kathy have fulfilled their commitment, and then some. I invited you to visit for two weeks, which has become a month, and is now being considered for another 3 months! You of all people can understand how that kind of commitment can change the lives of those you live with. You and Poppa did it regularly—on the farm; at the hotel; at the house on the hill; probably even while you travelled on the road.
What I have seen since you came here is nothing short of dramatic, Momma. You make your bed most of the time. You hang up your clothes. You still take naps, sometimes right after breakfast, but you also have days when you are going almost all day! Your memory has improved dramatically—especially short term memory about visitors, phone calls, meals, appointments, etc. I don’t know if this is due to the memory medications; the memory exercises we do sometimes; or just better compliance of taking all your medications as prescribed.
You have one doctor who wants to blame your memory problems on Alzheimers. The problem with that is that memory doesn’t get better in people with Alzheimers, and yours has certainly improved since you’ve been here—especially your short term memory. The other problem is that the neurologists who have examined you have said there’s no evidence of Alzheimers at this time. My guess is all the above have been helpful, and that there is no reason at this time to be concerned about Alzheimers. You’ve proven to me that you are very cogent and aware of what’s going on, though you are also able to mask that if you feel threatened or are uncertain about something.
When I’d visit you in Fort Morgan, you seem more despondent… more depressed. I think it was plain old loneliness. You are a social creature! One of the things I hope we can accomplish here, if you stay until September, is to meet other seniors and/or participate in some group activities. You have suggested staying with us in Kansas City until September. That’s a big jump from two weeks, but Michael and I (and Chris and Patrick) all want you to stay as long as you are comfortable.
I want to try to outline the various options for your living situation after September as I see them, and some more games we can experiment with in the meantime. Some of us sibs have been communicating and looking at possibilities. I will not spend a lot of time on some, because they are not likely scenarios, unless one of the other family members say otherwise.
Since the earliest days, before Terry invited you to live with him and Kathy, the best choice seemed to us to be an “assisted living” situation. We even showed you one in Greeley. Without saying it directly, you have always managed to indicate to us that you do not want to live in “one of those places”. It seems to me that you consider them the same thing as a nursing home, and that somehow it would indicate you have lost all of your own independence. Frankly Momma, it would have been difficult and expensive to get you into an assisted living facility three years ago, because you were much less independent than you are today! This option will be discussed some more in a bit.
You might want keep the status quo: living in Fort Morgan with Terry and Kathy in your new apartment, if they are still able to make that commitment. It is very nice and you have made some friends there. When we discussed “assisted living”, you’ve begun to tell me the advantages of Fort Morgan: Meet and Eat, and the Widows’ Group. You didn’t mention any disadvantages, but Terry and Kathy are both full-time workers and busy with their church. This leaves you at home alone for long periods of time. You sleep most of the time, missing appointments or Meet and Eat. As much as they do, they cannot and are not available to help encourage you to get up, or to eat or do something, which I or someone else does almost daily with you. They would need to be given an opportunity to determine if they can continue doing what they do, and if it would help you continue to improve, or if you will return to isolation, loneliness and poor eating and health habits.
Living with Lisa and Cameron sounds wonderful, but there are too many ‘ifs’ for it to work right now. And when Lisa has her new baby, she is going to be a very busy girl.
Finally, there is the slight possibility that you live here with us in Kansas City. I have been telling others in the family and they have been telling me that this is not a good idea for a number of reasons—chiefly my health and stress—and I have agreed. It takes some time and energy to help you and I want to do it—just like the others want to—but realize they cannot. However, Michael has asked me to reconsider. So has Chris. They both want you to be able to live here. Michael enjoys your company. We have a big house, and we can hire some help to lighten my load. So I’m leaving that option on the table for now.
You and I have spoken a few times about these things Momma. And I enjoy every visit I’ve had with you. The quick trips to Colorado took more energy than having you here for an extended visit. I think we’ve found a good specialist for your general medical care and that we can find just about anything you need medically. My experience with living with HIV gives me some insight on managing meds, and ways to save costs there.
What I haven’t told you is that I’ve been sneaking around looking at retirement homes while you were sneaking ice cream out of the freezer, because all of us kids think that is what is best for you. We think more social interaction with other seniors and with other widows is something that you would benefit greatly from. That’s one thing you’re not getting now and it’s what you mentioned as “pros” in Fort Morgan, though you didn’t always take advantage of them.
I wish you would forget everything you’ve ever heard or seen about “old folks homes” in the past. The world has changed, and despite all my kvetching, many things have changed for the better. You would basically have your own apartment (like in Fort Morgan, though smaller), and lots of people around you. Not drooling old men or folks that can’t talk, but others like yourself, who like to visit, do crafts, watch television, eat good food and sleep! No one will make you stay where you don’t want to be. You can visit any of us just like you can and do now.
Here’s what I am asking you to do between now and the family gathering in September. Go with cousin Kathy and me to visit a retirement complex near Liberty, where your dad went to school. We can eat lunch and maybe stay for a game of bingo. You can see things for yourself. Visit with the people who live there and ask them if they like it. We have already put a deposit down for a room, because this place is very nice and difficult to get an apartment or room. It is month-to-month, so if you’re not happier and it proves not to be the best thing for you, we will know because you tried it, not because you are afraid of change.
At any time you can call me and I will come get you. That’s a promise. I absolutely do not want you in a place that makes you unhappy. And I do want you to be able to say “I tried that”, rather than become evasive and talk about other things because the idea of living “alone” with strangers sounds so scary to you. It will take some time to get used to, I’m sure. Just like any new situation does. But you are so sociable, I think you just might like it so well that it will be hard to get a lunch date with you!
The family will gather in September as planned. We will have all the options above and maybe more to discuss and consider. Any decision will require your approval, of course.
This is one of the hardest letters I’ve ever written, because I feel like it must seem your kids are abandoning you, when that is the last thing any of us wants to do. At the same time we want you to be our mother, not our dependent. And we want to be your children, not just your caregiver.
I think you have gotten much better. And I think that will continue. Will you talk with us about this? You are very cogent and able to make decisions that affect you, in my opinion. It seems that this subject is the most difficult for you, but I believe you can express your wishes and your concerns. I also believe you are able to disguise what you are really thinking or feeling if you choose—or perhaps it’s even sub-conscious. It’s up to you to decide how much control you want to have with the rest of your life. Please don’t let fear stop you from living as active and fulfilled a life as you can.
I am sending this to all of your children and grand-children, along with a letter from cousin Kathy, who is also impressed with this place in the country, yet only 20 minutes from our house, and 5 minutes from Michael’s work!
I love you. I want to keep my promise to Poppa. All I ask is that you help us make the best choice, and that you try to be brutally honest, rather than let the “forgetfulness” slip in, no matter how tempting that may be.