Tuesday, June 30, 2009

And the Rain Came

Finally. It is raining. And it appears that it wants to make up for lost time. Since Kelsey's death, the heat has been unrelenting. The car read 106 on Sunday. Yesterday was the comparatively temperate 99. Pool water felt like bath water, and the grass and plants cooked in the unblinking sun. Now, I'm sitting on my back porch watching rain pound down. The thunder is almost like an angry yell directly over my head. Finally the heavens seem to be crying the tears I feel like crying, but haven't been able to. This feels like what weather to properly mourn by should be.

I bought a book on grieving yesterday, not that I expect it to help me all that much. I'm not sure there's really too much that words on a page can do to mitigate the thoughts in one's head or the ache in their heart, the emptiness of a house, or the silent accusation of the things sitting unused in a room. But, it had a chapter on dealing with the siblings of dead children, so I got it because that's my biggest concern right now; how to make sure we don't let our only remaining child slide down some rabbit hole. She's worked so hard to pull herself out of more than one to begin with, but it would be very easy to give up on all that hard work and take refuge in drugs, alcohol, her own eating issues, or some other new, unforeseen dysfunction. According to the book I have reason to be concerned. There were a litany of stories of surviving siblings who developed a host of issues following the death of a brother or sister. And the tales of shattered relationships with parents who ignored their kid(s) by becoming lost in their own grief or smothered them by becoming paranoid and overprotective were numerous and frightening. I thought back to my Wisconsin cousins who lost their brother in Vietnam. Two of the three sisters lost themselves in a bottle that they never climbed out of, and Jimmy died in 1968. Seemingly, I have some thin ice to navigate here. Problem is; I'd rather just curl up and not do much of anything, and tackling something that huge seems a little beyond me.

Speaking of which, there is all the business of wrapping up a life to attend to still, none of which I have the energy to try and tackle. I have to deal with her phone, a storage unit, her car and insurance, the stuff she had at her boyfriends, the thank yous, and the trickling notifications when people call or e-mail who haven't heard. Even a young life is complicated to wrap up and put away. I know I just have to take it slowly, not expect too much from myself and allow myself some leeway when not everything gets done right when it should, but at some point, life won't allow me that luxury any longer. Already the tasks of dealing with Mother's laundry, setting appointments for her and paying her bills as pulled me out of the stupor I'd rather be in. Maybe that's a good thing. Today, it doesn't seem that way. So, I'm happy for the rain. I'll hide behind it for a while and let it do my crying for me while I try and sort of all this out.

Sunday, June 28, 2009


One of conflicts (there were many) that Kelsey and I had was her belief that I did not acknowledge how hard she was working often enough and without some prompting. At the time, I thought that was a bad joke. She was right; I didn't often tell her I was proud of what she was doing. She had a half semester of college under her belt. She had a string of food service jobs (and yes, I do see the irony there) that she never managed to be able to keep. She ran through relationships like water, always blaming the men and their short-comings when the end inevitably came. She lived at home and even when she didn't, we paid her rent. Her dad and I covered most of her major expenses, but she was still constantly down to her very last dime. She was working off her probation for a DUI, and wasn't covering her volunteer hours, despite having almost two full years to work off 200 hours at the volunteer job of her choosing. That's without mention of the runaway train that was her eating disorder that caused us to hide certain grocery items to keep her from abusing them, stop buying others because she would abuse them so severely, and forced me to go to the store close to every day to try and maintain some core supplies that we couldn't avoid needing. On the surface, there was nothing that I really saw to indicate that she was working on anything other than ultimate self destruction. And, I would have told you on my worse days that she was hell bent on taking us all down with her. I always secretly thought that she enjoyed the disease because it caused her to be the constant center of attention. Then this all happened and her journal came into my possession.

I won't be able to read it word for word for a long time. Too painful for right now. And I may not ever be able to understand all of it - she wrote in a particularly tight, spidery script that her father and I have a hard time with. But when I was skimming through it to find poetry to use for the funeral service, I learned that I misunderstood her on a fundamental level. I owe her an apology that I can only give to others and hope she's somewhere listening. I learned she was working very hard to disconnect herself from her bulimia, and I think that's the validation she wanted. She would record the number of times she binged and purged in a day with a rant of self disgust. She wrote about the steps she took to try and beat it, and how they were ignored or unsuccessful. Sometimes the pages express the sort of anger and resentment we saw on the surface. Anger at us, anger at life, anger with the men in her life. But, those were the exception. She mainly was angry with herself and her disease, and it was clear how she hated it. But, it was strong and had an iron tight grip on her that none of us could pry loose. Least of all her, despite all her efforts. So, now I get it. Now I understand why she said that to me so often with fierce sincerity, and then looked at me as though I was beyond callous when I could only half-heartedly tell her I was proud. Maybe in the end it's not the shock of having the eating disorder defeat her, it's a shock that she kept going as long as she did.

All I can do now, of course, is to take her life's struggles with me wherever I go and make sure others know how insidious this disease is. It killed her in pieces until there was nothing left. I hope she is back and whole now.

Friday, June 26, 2009

The Day After

I am a little too alone with my thoughts at the moment; Greg's gone back to bed and Marissa finally fell asleep. I am not sure how late she was up, but I spoke to her at 3:30 this morning, and she had not been asleep at that point. I am not sure how she is overall, but I suspect not good. She seems closed off and out of reach to us right now. One wonders what she's thinking. She may see us as part of the reason she lost her sister. God knows, I do. She may think we're too detached to help her, or she may think we're not grieving quite enough if we laugh or smile at all. Or, she may just think we're deep in our own despair and she can't burden us. Whatever it is, I am uneasy at the moment. Losing one daughter in a lifetime is quite enough.

The service was, for the most part, really what we wanted for Kelsey. We think we captured her and honored her well. The pastor, I confess, was wonderful. I say it that way because we had never met him before, he "knew" Kelsey from what I told him two hours before and what he had learned from her grandmother, but he nailed it. And he was so kind. I am not sure how a lot of people who suffer long term issues like Kelsey's are when it comes to faith, but Kelsey was estranged from God. I doubt she could reconcile the notion of a loving God who cared for her with one who would let something like this happen to her, or at least not help her cast it aside. Our own faith is complicated, so that left us without someone to call upon. We had to rely on Kelsey's grandmother and her relationship with her church. I knew we were on thin ice there - Kelsey would not have wanted that initially, but I think she would have liked what he said. I think the main failing in Kelsey's eyes would have been that her Aunt Audrey was not there. She came, but her youngest daughter, after watching the early arrivals hugging us and the amount of emotion and tears, decided she couldn't stay, so Audrey took her to our house to release balloons. They made it back after the service. It's hard to know what to think about that. If you work from the assumption that Kelsey was not present other than in memory, then what does it matter, they honored her in their own way. If you believe that she was watching over us, then it makes my heart ache. However, hopefully Kelsey will realize that her friend Leslie flew in from Pittsburgh to be here. She had a horrendous ordeal to get here, with several plane delays causing her to land only a couple of hours before the service. But she was determined. She is a lovely girl, and I think her determination to be here to say farewell to her friend should tell Kelsey how special her life was. Sometimes the best family are your friends.

Yesterday was bizarre in too many ways. Yesterday Michael Jackson and Farrah Fawcett both died - Michael Jackson being the big shocker of the day. But, it seemed that some weird, bad karmic energy was enveloping the continent, and Kelsey's funeral was part of the wrongness. We weren't supposed to eulogize our kid. We were supposed to work all of this out somehow.

There is still a lot of chaos and activity surrounding all of this, so for now, we'll be too busy to dwell on what has happened. But, in a few days, the thank you notes will be written, the e-mails and phone calls will die down, and family and friends will all have gone back home. Then, I know, the real emptiness will begin. Already there have been moments when the house is too quiet. I used to long for that time - when Kelsey and the tension her constant binging and purging brought wasn't near us, but wow, how the silence seems to scream.

Thursday, June 25, 2009

Dear Kelsey,

Today is your funeral. I went out to get Mom's van ready for your uncles to pick her up later and the damn thing won't start. I hate that thing, it is truly evil, so I guess I'm not that surprised, but I was hoping karma would take pity on me today of all days and make it behave. Anyway, while I try to charge the battery, I thought I would write to you since we never got to say goodbye.

I think we have things mostly the way you would have wanted them. Eli told us too late that you wanted an open casket, but when he said why, I have to tell you, sweetheart, I would not have honored that wish. Other than that, we tried to make sure this was your time and no one else's. We had to fight your Grandma Veldman on a few things, but your dad was steadfast in making sure our wishes prevailed. I know she means well and she is hurting a lot, so I will forewarn you that I told the pastor to include some Bible verses that she wants. I hope you understand.

Your artwork is incredible. Your Aunt Audrey arranged it, so it's well displayed. Ironic that you get your own little exhibit. It tears me to pieces that this will be your only one.

This morning, I thought about the new Harry Potter movie. It is finally about to come out, and I had always sort of figured you and I would go see it in Imax. Now I have to wonder if I will have the strength to see it at all, or if it will remind me too much of you and overwhelm me. I realized that this is the first of probably a million things like that for all of us. I know that I will be at Pecan Street in the fall doing early Christmas shopping and see something and think, "Kelsey would like that." Then I know it will hit me, and an open wound will be salted down. I know these things will happen. I can't stop them, all I can do is try to endure them. I really have to because I still have Marissa and your dad to think about.

Speaking of Marissa, I am really worried about her. I have to think you never would have left her on purpose. Know this: she loves you more than anything or anyone else in the world. She always did, even when your disease hurt her and distressed her. I think it was the same for all of us. The disease was hard to live with and we hated it, but we loved you. But she in particular never lost sight of the fact that you were in there somewhere, and she always believed that someday you would break free from it. I have to confess I wasn't always sure.

Your cat is horribly traumatized. Did you know the police took her to the animal shelter? I was mad about that initially, but there wasn't really any choice at the time, I now realize. It took a couple of days before we could get her back. She is upstairs now and gradually recovering as long as the dogs stay clear of her, but she came bounding down the stairs crying loudly last night when a friend of mine came calling whose voice is a bit likes yours. It was heartbreaking. Know that we will take very good care of her until we can find her a really good home. I don't think she would be happy with us permanently because I don't think she'll ever warm up to the dogs, but we'll keep her with us as long as it takes to make sure we find someone who will love her as much as you did.

I mainly wanted to tell you that planning your funeral meant going back through old pictures and skimming your books and music, and it made me reconnect a bit to the Kelsey who was my daughter. I had, if I am being really honest, lost site of that person. I saw Kelsey the Disease mostly this last year. But, I remembered who you really were over the last few days. I remembered how you mentored a learning challenged child in your elementary class without anyone asking it of you. I remembered you getting tossed out of a friend's house for cleaning his room (of course, I never forgot that one because I was upset with his mother). I remembered how when you were 9 or 10 we had to get gym shoes for you and you announced to me that you not consider Nikes because they used child labor. I remembered, painfully, I might add, how you held my head when I had morning sickness when I was pregnant with your sister. You gave me the biggest, warmest hug right before I went to the hospital to have her. I saw all these pictures of you with your cousins. You loved them, it was so obvious. That is who you really were.

There are so many things your dad and I will now never get to share with you. We'll never see you sell your first piece of art. Your dad will never walk you down the aisle. I will never get to return the favor and hold your head when you have morning sickness, and we will never hold your children in our arms. But, above all, we will never celebrate the day with you when you finally beat the bulimia. That, above all else, is something I will struggle with. I know we did not do enough for you, particularly this last hard year. I was so exhausted in so many ways, but that is a sorry excuse. I won't try to rationalize it, and there are no second chances here. I can't say more now, it is too much.

Honey, I love you. I am sure you doubted it at times. Please do not. I miss you so much.


Monday, June 22, 2009

Sharp Right Turn

Some of you who follow this blog already know, but one of your fellow co-followers passed away Saturday night. Marissa and I were in the mountains of West Virginia with no cell service so a State Trooper was sent to break the news at 2:00 a.m. Since then, it's been a long, surreal time. I will ask your forbearance while I a) take a break for a few days to deal with the business of an untimely death, but b) when I take a sharp right turn from the topic that brought me to the blogging world in the first place. Kelsey's story can now be told without worrying about exposing private things. It should be told and hopefully I can get people to listen so other parents will not be where I am at at this moment, which is lost. Not for this senseless, wasteful reason anyway.

Ironically, Kelsey followed the blog. I am not sure how intently. Probably not very. But, she left me a comment on the post I made about David Cook's mom where I spoke to how she handled herself in the face of her son's disease. I find it so ironic even though her comment was making fun of me for apparently mis-using the term Cougar. I will now never know if she saw some of the subtle hints I would drop in the posts for her or not, the most blatant being that entire post. There are so many things I will now never know about my daughter.

Tuesday, June 16, 2009

Tip No. One: Don't Forget that Time Flies

Remember how they told us that perpetual motion was impossible? I never understood that or accepted it. Because time is in perpetual motion. Our cells are in perpetual motion. I am older than I was when I sat down to begin this post. But, not as old as I will be when I begin the next one, and so on. Time, the sonofabitch, waits for no one. So, you know that parent you're looking across the table at wondering how you're going to handle? Well, look hard, buddy, because before you know it, that's going to be you. So, try to remember how it feels to be frustrated with him or her because that's how your family will feel someday about you. At some point in your life, long or short as it may be, you'll likely be in a position to need a little helping hand. So, now, while you still have the energy and mental capacity to do it, remember all the lessons you're learning about caring for a loved one and do the things you need to do now to make it a little easier for them when that time comes along. Make sure the will is in order, the life insurance policies and information are all in one place, you have your doctors and your medications listed out, and, above all else, you've communicated with your loved ones about what do with when the inevitable happens. Take that burden off of them and deal with it upfront.

For my part, I hope I remember what it was like having to haul myself up to the nursing home day after relentless day just to stare vacantly across at my mother because what is there really to talk about when you just saw her 24 hours ago and she can't hear you anyway? I want to remember that feeling so I don't expect the same from my kids. And I want to remember that it is unpleasant to deal with an adult diaper; it just is. I hope my family handles whatever indignity I put them through by trying to maintain mine, but I do want to remember that it's hard so that I cut them slack when they make faces or sigh heavily or, worst case, have to gag. And I hope I remember what I've said here today: we get old. We eventually die. I want to be able to face that inevitability with some grace. The saying, "You're only as old as you feel" is a great one, and I don't want to curl up in a ball and stop living my life just because I pass the half century mark. But, conversely, I want to be realistic and know that no one, not kings nor queens, nor witches and warlocks have ever cheated time and death. Vampires even can die, whether they are the PG Twilight version or the Anne Rice rated R variety. So, I want to remember that's the case and have an advanced directive in place, make sure I've made my proper peaces with whomever I need to, and make sure I've done what I can to take the burden of my last years off my family.

And, unfortunately, that time will likely be upon us faster than we're ready for it. I can still remember my childhood so vividly, it seems like such a short time ago, how can I possibly be in the afternoon of my middle age? One thing is absolutely true no matter what is happening in my life: time flies by unimaginably fast. So, thinking that I've got all the time in the world to put my affairs in order is a fool's dream. I need to do it now. So do you. And I mean that whether you're in your 20's, 30's or beyond.

Saturday, June 13, 2009

Tip No. Two: Communicate

You know, I really don't want to talk to Mother about her impending death and what she wants at her funeral. I really don't want to have her tell me what life insurance policies she has and where the will is and what outfit she'd like to be buried in and what little trinkets that aren't covered in the will should be given to what relative. I don't want to talk about any of that stuff. But, I need to. And she needs to talk to me. Otherwise, I risk a lot: I risk not being able to carry out her wishes and not being able to give her the funeral she envisioned and wants. I may not be able to adequately deal with all her financial and business affairs correctly. But who wants to talk about that stuff with their family member?

To Mother's credit, she's tried to initiate the conversation a few times. I blew her off each time. For two main reasons: given that there is a mild distrust that does exist and runs both ways, I didn't want to seem overly anxious for her demise. I was afraid if I came over to have The Talk with her, she'd take it as a sign that I was after the estate. I didn't trust her enough to be sure that she wasn't using The Talk as a test to see if that's what I was doing. But, despite our strains, she had always been a part of my life, and I really wasn't particularly anxious to imagine that changing. Now, of course, I've put myself in a situation that's pretty interesting. She's fairly incoherent a lot of the time and given her circumstances, she's sure to take any attempt at talking about final arrangements as a sign that I'm wanting to hurry that process up. So, I should have the conversation fifteen years ago. The perfect time to have had it was when Dad died, it would have been a natural conversation to have in light of what we were dealing with. As a matter of fact, I could have made it a "we'll talk about both of our wishes." But of course I didn't do that because I knew she would violently oppose what I wanted for myself (which is cremation) and there was enough sorrow and chaos to keep us distracted. Probably a better idea would have been a few months later, but it didn't happen then, so no reason to dwell on that now.

Dad did it the right way. His military manner carried through to the very end. Actually, the fact that he lived in the same house as a colossal hoarder was pretty interesting, but you definitely knew what areas of the house were his. It was like entering another planet. The garage and the study were his domains, and everything had a place and was in its place. Therefore, it was no surprise that he had everything pulled together in a rigid, efficient manner, and he toured both Mother and I separately through his paperwork, making sure we knew what policies he had in place and where the documentation for each was.

Mother, as I mentioned, tried to follow suit a few times, but zebras have their stripes, and I can tell you when I packed her up, there was no one central location where all the pertinent documents were located. Hence my suggestion that lists be kept and you know what you've got. But, it's also knowing what Mother wants at her funeral. I know some of it from what she insisted for Dad and from listening to her comments about other funerals, but I don't what Bible verses she wants read, what hymns, things like that. One could make the argument that it won't matter, she won't be around for that part, but that's not how I want to be. Despite my own personal feelings about open caskets, I'll respect that wish. I should, along that vein, make sure she gets the send off she wants, but now it's a delicate balance to figure out how to find that information out.

So, bottom line, talk about all of this with your own parents now, before it's impending and talk about your own wishes with your own family now - because, life is uncertain, which is why Amy's wants you to eat dessert first.


Wednesday, June 10, 2009

Tip No. Three: Know What You've Got

Do you know what life insurance policies your parents have? Do you know where the account information for each of them is? Do you know if they have supplemental insurance and, if so, through whom? Do you know about the will? If they rent, do you know what you would need to do to terminate the lease? What about their wishes for burial? If one or the other is a veteran, do they receive benefits and do you know whom to contact about that? What about their assets? Do you know what they own and owe? Do you know about that stuff? Me neither.

If Mother had died that day last September, I would have been in a fine pickle trying to figure it all out, and I really hate pickles. As it is, I kept an eye out for anything that looked like it pertained to any of the above mentioned items when my daughter and I packed up her stuff, but I can't say that I've found it all. I still find out about things when I get mail for her from this, that or the other. Six months later, I'm still trying to get the address changed on a lot of it. And, as I've mentioned before, Mother is the quintessential pack rat. A product of the depression, she couldn't bear to throw anything away. So, you know what you're looking for exists, you just don't know in what pile it's likely buried. Trust me, that's as bad if not worse than not keeping records at all. At least with no records you don't spend hours upon hours looking for something. I know Mother may be the Queen of all OCD hoarders, but I also know it's not that completely unusual for someone who came through that time either. So, I know there are more of you out there that are facing parents or grandparents much like Mother. So, my advice to you is to get a handle on what's in place and figure out if it's enough to cover what you'll need before you need it. How do you do that? That my children, is the topic for tomorrow.

But, I would like to close with a little note about the Penguins. I'm a band waggoner, there is no denying. I am using the Stanley Cup Finals to fill the long, yawning void that is the NFL off season, but, dang, that's some good, exciting hockey. Way to go guys - bring home another championship for Pittsburgh on Friday, that town deserves it.

Tuesday, June 9, 2009

Tip Four: Get Some Power

Mother and I for decades now have had a dysfunctional way of relating to one another, so it was in that vein that she told me shortly after Dad died that she had asked her attorney to create a Power of Attorney document giving me full power over her affairs in case something happened to her. She told me by pointing out that "everyone" told her not to do that because I would just rip her off, but she didn't believe that and was doing it anyway. I was never sure who "everyone" was, but I think it was a couple of people she bowled with because one of them had been badly burned financially by a kid. And, I don't know if the truth of it was that "everyone" really thought that I personally would mishandle her finances, or if it was a general statement of mistrust about letting someone have that kind of blanket authority. Whatever the case, that's how she did things, in a most annoyingly back-handed way. I was not much better in relating back to her, so I can't get too bent out of shape really. But, regardless of all the game playing accompanying it, she was trying to get her affairs in order, which is a good thing. She even sent me a document that I didn't pay that much attention to and filed away in the fireproof box, forgetting for years that I even had it. So when we began this journey last fall, she told everyone that I had that authority, and I thought I was ready to go. I pulled what she had sent me only to find it was only partially executed. She said she had the original in her lock box (leading me to the adoption discovery), but in fact all she had was a draft. Whether it was out of some sort of mistrust after all, or she just was do disorganized she never got around to executing it, we had to begin from scratch. That was interesting. A friend who is an attorney drew up a new document for me, but getting it signed was an ordeal for two reasons. She did get suspicious about my intentions, and she wasn't exactly in the greatest state of mind most days. My mother-in-law stepped in, arranged for a Notary and took them both up to the nursing home to get it signed on a day when Mother was doing pretty well mentally.

Suddenly, taking care of Mother's affairs became easier, but not completely easy. Because, as I have found out on several occasions, it's not a blanket authority for all things. I still have to consult with Mother or get her signature on a number of issues and that can be maddening. And that will range from a simple change of address request to more complicated financial arrangements. And, as I have found out, she can make financial decisions for herself as well. One day I got a check in the mail made out to her for a large sum out of her brokerage account. I was shocked. Turned out, she had called them up and asked for the money. Not sure what for exactly, she just thought she needed it. I had visions of her draining her own finances down on senility fueled whims and leaving me unable to pay her room and board. Her broker, however, is completely powerless (and probably pretty frustrated herself). She has to do what Mother says unless I have her legally deemed unfit, and, with the Power of Attorney in play, has to also follow my directions, which sometimes conflict. Just yesterday, I had to convince Mother she didn't need to pull a chunk out of her account. She didn't recall signing the document we both had to sign that pulls enough out each month to pay the nursing home and figured I must need some money for her bills. But, I don't really want to have her legally deemed incompetent. That's just a level of conflict and indignity I don't really want to inflict on her. So, I just grit my teeth and try to take it a day at a time.

Other entities, like the Department of Defense, who pay Mother a small annuity as the widow of a veteran, could care less that I have that document. Mother has to authorize anything we do on the account. And, all I'm trying to do is get the address changed. But, I do get it. There is a lot of fraud out there, and everyone has to be careful.

And even medically, the Power of Attorney only takes me so far. I learned that as long as she can follow what a medical team is telling her, she is in charge of her own medical decisions, no matter how bizarre those decisions might be. As an example, that horrible Sunday when she checked herself out of the hospital against medical advice, I could not have stopped her, Power of Attorney or not.

But, it's still an important document for me to have. I was able to get her taxes filed as a result of it. Her doctors are able to speak to me freely with it in place, and I can make the all important financial steps needed to make sure to keep her care going. So, I would encourage every family with an aging parent to make sure one of the family has that authority, but to do it before the crisis erupts.

Sunday, June 7, 2009

Tip Five: Write it Down

Okay, I'm back to my tips list. This is a short and sweet and is related to the last one: once you've done your homework, write it down. Seem obvious to you? Good. But, I got caught offguard on some things I never even thought of initially, so make sure you think of everyone and everything that you might need to know in a time of crisis, because you cannot count on a clear-headed recall of all the facts when it happens. And, then, when the inevitable happens, will you know whom to contact?

For me, this became an issue recently. I have all Mother's records of course since she just can't seem to throw anything away, but in the chaos of moving her during the holidays and then trying to jam all her stuff into storage like little puzzle pieces, I have no idea where anything is. So, when she began complaining of a loose tooth in her partial (like a portion of fake teeth), I was at a loss. I was at a loss because she doesn't know who her dentist is. She vacilates between telling me she doesn't have one and doesn't remember who it is. I would rather she see someone who is familiar with her and her conditions, but I've quizzed her a few times thinking I'd catch it on a good day. No such luck. Well, when all this started happening last fall, her teeth were the furthest thing from my mind. As were her eyes, but fortunately I'd been with her to her eye doctor before, so that was not an issue. So, I'd recommend having a list somewhere that all the immediate family members can access (so, in other words, don't stick it on your Blackberry unless you want to get pulled out of a meeting at the wrong time or something like that), and the list should include all the caregivers, all the medications, anything of note (past surgeries, allergies), etc. and people to contact (close friends, aunts, uncles, etc.) so you can keep them apprised. If that seems like a tip that goes without saying, then you're a better person than I am because I didn't have it at my disposal.

Friday, June 5, 2009

A Happy Birthday Diversion from the Tips Countdown

I am taking a little side road from the tips countdown to wish both my daughters a happy birthday. Kelsey turned 23 on May 28 and Marissa turns 20 today. There were many times their father and I did not think they would make it to this point, and it was not without a lot of effort on their part that they did. They have battled through a lot of heavy stuff in their brief years, and I know, even if I don't always say it well, that it has taken incredible tenacity on their part to get to this point. With Kelsey in particular, the war is far from won. Whatever I write about my travails about caring for my mother pale in comparison to what my struggle is with watching my kids suffer. It's different. It's harder in many respects. For one, it's not the way life is supposed to be. An aging parent is the natural order of things. A sick or dying child is not. But, it's so complicated. At some point, even if they are still your offspring, they have to take the reins of their own fate and look to their own recovery or lack of it. Many, many, many blog posts can be dedicated and then debated about all of this, but I don't want to digress too far afield or publish too much of their struggles without their prior knowledge. Suffice it to say that I sincerely hope that by this time next year, they can reclaim the outlook and sense of wonder they had when they were small.

Wednesday, June 3, 2009

Tip No. Six: Do Your Homework

My advice is to know something about your loved one's underlying medical conditions. Know what medications they take and what they are allergic to. If a new condition arises, say a stroke or cancer, then research what you can about it. No one expects you to be a doctor, unless of course you are one, but having some underlying knowledge about some of the issues at hand and the terminology that is going to get thrown at you will help you make better decisions. A couple of things brought me to adding this to my list: I can't tell you how many times in the last six months I have been asked what medications my mother is on. It's easy to answer now, because the nursing home hands me a rather thick folder to take with me to any outside appointments that contains a list of all her current medications. But, when this all first happened, I knew she took insulin, but not what kind or how much. I didn't even know there were different kinds of human insulin (one of dogs takes Vetsulin - that was the only variation I knew existed). And Mother took different dosages in the morning and the evening. And then her apartment was literally littered with pill bottles. I had no idea what she was taking all the time and what she just hung onto because that's what she does. And they'll ask you about surgeries and past hospitalizations. Some of it I knew, some I didn't, others I would forget about depending upon the stress of the situation, but it could all make an impact on how successful they can treat the patient. And make no mistake about it, you'll be the one answering the questions. My mother a) can't hear, b) can be combative and c) is addled to the point where you can't trust on the fact that she is following what you're saying. No one turned to her first to answer any of that data (which, of course, made her furious, but...)

Then you will quickly learn that medical professionals in a hospital setting are really, really busy. They also are not necessarily people oriented. Some, not all mind you, are fascinated by the work they do, not necessarily the people themselves. Think House without quite the attitude and probably a lot less money. So, they come sweeping in, tell you a lot of information in as brief a period of time as possible, using terms that sound Greek to you, but are in fact Latin, and then ask you if you have any questions, hoping to God that you don't so they can sweep back out. In the meantime, you're left with trying to wrap your head around what they just said and trying to make an informed decision about it. Modern large hospitals are a lesson in world culture these days as well. That is not a bad thing, but my hearing, thanks to way too many concerts with no ear plugs, is not what it used to, they are talking rapidly about things I'm not familiar with and, if you add any kind of accent to that, it was easy to lose me. Or, if I found their accent lovely or intriguing, I would find myself listening more their inflection or the lilt of their voice than what they were saying. In short, I let a lot of critical information slip through my shattered mind early on, so I would need to spend a little time later figuring out what they had been trying to tell me in dumbed down terms.

And, in the end, doctors and nurses are only human. They have opinions, they make mistakes. The less you know, the less likely you are to catch a problem before it's too late. I like how my friend Francine is approaching her mother's back problem. She and her family have considered the matter carefully. Francine researched the type of doctors who are qualified to handle the symptoms her mom has and had a list of them. She wanted two opinions, and the whole family conferred to help make the final decision to go forward with the surgery. Of course, they had some time. Sometimes, bad things happen in a flash. My father-in-law fell down the stairs in his home (I know, I seem to be a magnet for men who fall down stairs, but I was no where near them on any of these occasions). Everything changed in an instant. They thought he broke his back, then didn't think he did, then discovered later that in fact he had, and his health and quality of life declined rapidly from that point forward. No one could have foreseen that, of course. But once it was set in motion, understanding the treatments and options was vital. My mother- and sister-in-law cared for him at home for his last few years. They were very involved with his daily care and had to understand it.

Finally, if you have some basis of understanding what all these really busy people are tossing at you, and don't look like a deer caught in surgical lights, then they will tend to take you more seriously and, ironically perhaps, slow down just a bit and spend more time with you. Their respect level goes up a bit, and suddenly, I believe, they see you and your loved one a little more clearly as opposed to just scribbles on a chart. It certainly doesn't hurt. Figuratively speaking, that is.