Being prepared

The building was tucked in a landscaped lot. It looked a senior care residence but it wasn’t. It was a neurological rehabilitation center.

A high school chum of the beloved husband had a massive stroke two months ago. It was tragic as they all are. He had it outside his car at 11 p.m. It was cold and drizzly and he laid on the ground until the trash collectors found him early the next morning.

Amazingly he survived. There was a lot of neurological damage, hence the rehab.

We drove to see him last week. It’s about an hour drive. He has been there four weeks. He has regained some speech but it’s not fast and barely audible (or maybe that’s my ears). He still has a tracheostomy and a feeding tube. He can’t swallow.

It was an eye opener for me. The place wasn’t bad or ugly but it was institutional. There was that faint smell of antiseptic and body waste. It reminded me of the days I spent looking for an assisted living place for my former mother-in-law. She had early dementia. It was severe enough that she couldn’t be alone but not so severe that she didn’t know what was going on. I remember her asking repeatedly to go home. Painful cries that broke my heart.

The rehab was clean but there were sick people in close quarters. The workers were great. Many were from Haiti and were true care givers. Everyone knew our friend.

When we got to his room I noticed how small it was. There were two beds with barely enough room to walk around them. He was fortunate that the other bed was currently empty. Can you imagine living this close to a complete stranger for weeks on end?

Our friend has plateaued. It’s not that he can’t recover more functions. He is starting to walk again but he has lost his spark. The nurse says that he needs to “want to” work at it but hasn’t been cooperating.

I don’t know how I would fare in that situation. I want to think that I would work like hell to get out of there but would I? Do you get overcome with the magnitude of the rehab work and the frustrations? Do you get homesick, maybe want your own stuff. Want your own life back? Do you think it’s the end of the good life?

Do you start getting that “walk in the woods” feeling?

We are hoping for the best. He looked good and seemed genuinely appreciative that we came. I wonder what he really thinks but that is his story.

This has made me realize that we need to be more prepared and it’s beyond cleaning out the attic and closets. We need to have a “When I Die” folder that includes a lot more than the clothes to get buried in (me) or where to toss the ashes (him). I don’t know all it should be but that is on list to work on soon.

The goal is to not burden the family whatever happens. Most people wait too long to do it. I don’t want to be one of those people.

57 thoughts on “Being prepared

    • It’s been a couple weeks since we saw or heard anything. I was wondering if he was able to get out of the rehab facility. He had already been there several weeks when we saw him. I also wish him the best.

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  1. A lot to absorb here, and it should serve as a call to action for all of us. Yeah I know, I’ll probably find all sorts of reasons to put off doing the responsible thing. But, this post has had an impact on me. I hope your husbands friend finds the will to fight through his setback. Maybe he could not only benefit himself, but others as well with an example of what can be done when one finds a way to not give up, in spite of a severe blow to ones health. I truly hope so.

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  2. Great post and many points to consider. My ex and I had done everything couples are supposed to do including the creation of a living trust. Now I find it all too daunting to do again, but I really should do so. My wife knows nothing about any of that, so it’s really on me to do so.

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  3. Poignant. I echo you making your own planning a priority for the summer. Mom didn’t do much of this so I did in the few days after she passed. An honor to tend to her that way, but it all came tumbling in on me when the crowds had left the lunch. Now we have plans and instructions (in writing)…too much to worry about in the moment when it comes. I trust those we leave behind (someday) will view our forethought as grace. Love the way you share…quiet, open with a dash of courage for good measure. It touches me inside. Well done.
    Dan

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  4. A friend of a friend died unexpectedly Monday at 65 — he worked as a personal trainer! You just never know.

    But it is the issue that nobody wants to talk about, isn’t it. I don’t shy away from it, as my sisters didn’t live very long (47 and 61) and I’ve had chronic health problems for 40+ years. I honestly think that forcing a promise from one’s family never to put me in a home” is too burdensome. I watched it nearly kill my father and my mother-in-law. I’ve told my husband and my son (and my siblings, too). Just do what needs to be done to keep me comfortable.

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  5. It really hit home for me when my father was dying, and also during the years I took care of my mother as her health declined, and she eventually became bedridden and unable to communicate. Back during the earlier years, I started with just having a Living Will and Power of Attorney drawn up (two of them actually; one for financial, and one for medical). Then an Advanced Directive. Then made sure I was registered online for organ donation (or maybe that came first, can’t remember). Then I purchased a pre-paid cremation plan and made sure my life insurance beneficiary information was up to date. And also put together a notebook for my kids that has all my banking information, including passwords and balance information and duplicate cards, where appropriate. Same for all monthly expenses. Account numbers, online access codes. Have always kept a budget book, so made sure they knew to look there for when everything comes due, and who the various providers are for electric, water, trash, etc.

    What probably started as a photocopy of my donor registration card, ended up being a notebook with probably about twenty tabs, and includes lots of legal paperwork. I’m in the process of deciding whether or not to re-do my Will, (to create a Trust, versus a Living Will). Also considering purchasing (in advance) a memorial service, similar to what we did after my mother was cremated. In an effort to make it as simple as possible for my boys (and extended family), I have also executed DNR paperwork, and made everyone aware of my wishes.

    But it all started, really, when I was arranging hospice care for my father. He was transferring ownership of his business to me (so that I could hold the licensing end of it, but it was actually intended to pass to my brother, who wasn’t able to hold the appropriate licensing because of having a felony record). Anyway, the moment the business became part of my “legal assets”, I knew I had to do something instantly to protect both my kids and my brother, and to ensure my father’s wishes were carried out. The last thing I wanted to do is leave my kids with a legal nightmare because of the business. So I quickly began with the Living Will, and kept adding on from there. It’s all a bit daunting and complicated, but from my perspective, I tried the old “just handle one thing at a time” way of getting there. Now I’ve had my “Need to Know” paperwork together for more than ten years, and it gives me some sense of peace and a feeling of assurance to know I’ve done what I can to make that part of the transition easier for my family.

    p.s. As far as the DNR goes, I learned I had to have an “in hospital” version, and an “out of hospital” version. Otherwise, by law, any first responders are required to render aid. To obtain an “out of hospital” version, I had to have it signed by a physician and witnessed by one family member (son), and one other person (stranger, or someone not known to me), and notarized. I made sure it was all done legally, so there would be no question about authenticity. I also learned I needed to take the extra step of (a) always carrying a copy of the notarized DNR paperwork with me, (b) making sure all my family members were aware of my wishes, including my son, who is Executor of my Will, and also holds medical Power of Attorney, and (c) me wearing a medic alert bracelet at all times, indicating that DNR paperwork is on file.

    I think it’s always good to have a plan in mind, and then start putting the pieces of the puzzle together. The thing I wasn’t expecting was how peaceful it made me feel, knowing I had done this for my kids. That part was a nice added bonus. It feels very much like an extension of my love for them. Being willing to face the uncomfortable details of death, in order to make that process a bit easier for them to navigate.

    One other thing I’m doing right now (still in progress), is adding written notes for various personal effects that are intended for specific individuals. That is more about sentimental value, and not monetary value. My grandfather’s walking cane. A hand-signed art print. My charm bracelet. A set of wind chimes that carries a huge sentimental value. A beautiful quilt, alive with oranges and blues, and something very special to me. I have added a tab in my notebook, and have also started placing notes on the backs of hanging pictures, etc. For now, it’s become a growing list of “preference” that various items be given to someone as a special remembrance. Also have had the discussion with my son about the existence of the list.

    Sorry … this ended up being a much longer comment than intended. But all of this happened in chapters, and not all at once. I think it started with the organ donation registration, and then the Living Will, and it just kept getting bigger and wider in scope and paperwork. One step at a time, in whatever way you are comfortable moving forward.

    I also had the added benefit of seeing how my father-in-law and mother-in-law had already done something similar (to a smaller degree), and witnessed the intense difficulty my husband (at the time) and his siblings went through when they had to sort some of those not-previously-handled details out, all while trying to accept and cope with the unexpected death of both of their parents, within less than a year’s time. So I had witnessed the process when there was no advanced planning, where there was some advanced planning, and where there was nearly complete advanced planning. From that perspective, it was much easier to choose the option I wanted for my kids. Didn’t make going through the motions, and all the details and work and decisions, so much easier, but once I made up my mind to do it, then it was just a matter of tackling one item at a time. Now there are days I feel like this might be one of the most adult things I’ve ever done, and it also feels like it is one of the best ways I can express my love for my family. So it gives me a huge sense of peace to know it is all in place now. Thanks for allowing me to express my feelings about the subject here in your comments. This was longer than most of my blog entries!

    But it’s a good subject, and one that often times people find difficult to discuss. Good for you for not only opening the conversation, but being willing to explore how you might want to move forward as you continue your exploration of the subject. Funny how I can usually tell within the first sentence of your blog posts which direction we’re headed. I knew this one was serious from the first sentence. Love it when your posts begin by drawing us a picture.

    Of course, also love the other type of blog posts, too. Obviously. I’m still lurking about. Again, thanks for opening the conversation, and one more apology about the length of my response. Oy, my fingers sure do know how to fly across the keyboard when I’m passionate about something.

    This could just have easily said “I completely believe in advanced planning, for a variety of reasons, because it not only benefits the family, but also provides a deep sense of peace for the person willing to do the advanced planning.” One sentence. One short paragraph. But nooooooo …. LOL

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    • You have included some information that I didn’t know about and will investigate. I appreciate your efforts on this. I need to wrestle between a will and a trust too. My husband and I married late in life. He has adult children and I have loved relatives. We need to make sure that the right people get the intended stuff without hurt feelings while making sure we both have what we need. It gets complicated.

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  6. CH and I both have a Health Care Directive and we have also had repeated conversations about what we want or don’t want. It was/is hard to talk about. My Mom-in-law just stated this past Sunday that she feels sure she will be able to live in her small condo until the end. I hope that is true for her. Other than that she has told us nothing about her wishes. You and George say it all for me in your conversation beginning with his comment.

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    • My mother was a tough cookie right up until the end. She made me the executrix on a hand written will despite the fact that I am the youngest. Hopefully my brothers were relieved they didn’t have the work but I would have felt better had she had the conversations prior. George is right about that too. Death isn’t the worst thing.

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  7. You’re right about the advance planning. I don’t know why it happens to be so difficult to say certain things outlaid, but preparedness should give us some peace of mind. I don’t think there are too many of us who haven’t had some experience with visiting rehabilitation or convalescent hospitals and they definitely break my heart. I hope your friend regains some quality to his life. This is truly a tragic story. He’s fortunate to have friends willing to visit in such an uncomfortable setting.

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  8. My husband’s former employer has sent all us retirees and spouses a “survival handbook.” Very thoughtful of them. Once we fill it out, it will contain everything our survivors need to know. The trouble is, it’s 35 pages long and very detailed. I know where it is, and I intend to fill it out. But it won’t be fun. I think I’ll do the closets first. I already have a start on that.

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    • My mother’s greatest fear was that she would end up in a nursing home. She made me promise time and time again that I wouldn’t do that to her. Fortunately I didn’t have to make the decision. She was ill for a while but able to manage with in-home help. When she took a turn for the worse, she was hospitalized and died there overnight. Other than not dying at home, there was no other placement for her. She knew she would come home after the hospitalization.

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  9. So sorry to hear about your friend, Kate. After working at a nursing home for years, I know that motivation is such an important part of recovery. I wish him well.
    And yes, it’s so vital to be prepared. Everyone should have their wishes down in writing. Whether it’s called a Living Will, a Health Care Directive, or whatever, let your wishes be known before it’s too late.

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    • He was an emailer. His wife is talking about getting a laptop in there for him to use. It would be great therapy and everyone would have access to him. In the meantime there are cards and stuff.

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  10. So tough. My grandmother has her place all picked out. She’s currently in an apartment on her own in a retirement complex, but she’s reserved a spot in the assisted living portion — doesn’t want to be a burden on her kids or grandkids.

    And yet I’m pretty sure she will outlive us all.

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    • I agree with you about the depression but he has friends stopping by and the staff all know him well. His kids who live cross country have not yet flown in and maybe that is a worry for him. Maybe his depression is his fear of limitations on the life he knew. He was a golfer and card player. His friends have been talking about coming in for a game but the facility doesn’t have rooms big enough. It’s a “get them better and out” kind of place rather than a residence. I was very depressed on my short visit.

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  11. I have had an extended stay in rehab twice now. Once was really enough. Where I am, that meant a senior care facility which is not the place to be when you’re relatively young and of reasonably sound mind. Fortunately for me, I had a friend at the first place and we were a little competitive about learning to walk and do other things again. Plus, I had friends nearby who got me out of there for day trips as soon as I was able. It kept me in touch with real life and got me past that stage where I just wanted to give up. My guess is that your husband’s friend is grieving. He knows that his life is never going to be the same but doesn’t know enough about what it might be to be ready to put the effort in to get there. Everyone is different but it might help if he has friends or family in the area who can take him out to engage in real life again.

    Oh, by the way, I came here via Ms. Bean’s blog. I’ve been enjoying reading for a while now…

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    • Our friend has just gotten to the stage of mobility. His kids live cross country but his wife is very healthy so I’m sure she will get him out on visits as long as she feels she can handle him. We would all pitch in too. Thanks for stopping by. Your story is amazing and I can see that you are a survivor. I have seen your comments on Ms. Bean’s blog often. You get there right before I do! Thanks for stopping by.

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  12. “The goal is to not burden the family whatever happens.”

    That’s my goal, too. My parents, who are long gone, were of the same mind, but I can see that my in-laws are avoiding reality completely. It’s good that you went to look in on your friend, even if it was difficult for you. Time marches on in some odd ways, doesn’t it?

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  13. Your words brought back so many memories of the last few years of both my parents’ lives. We would all like to think we will live to a ripe old age with all of our faculties and just die in our sleep one night. Unfortunately, that only happens to a lucky few. Most of us will have some form of decline similar to your friend’s. Good reminder to get our things in order to ease the burden of those who survive us. Best wishes to your friend for a good recovery.

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    • We can prepare the mechanics — all the legal papers, wills, etc. Some people plan their own funeral in advance. My father-in-law wrote his own obit. Then when it happens, it’s easier. There is still a lot of work, homes to be sold, cars, etc. but it’s easier. I like your idea of leaving messages of love. Some people write letters to their family to be given after their death.

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  14. I’m not really afraid of dying. What scares the hell out of me is laying in a hospital room, or any room, being dependent on other people and not being able to take care of myself. I don’t know how I’d react. I don’t think anyone really knows. For me, that’s worse than death. I don’t know how to prepare for that scenario, though I’m sure there are steps to be taken in terms of legal documents stating your wishes for recessitation, etc. People don’t discuss it because we don’t want to think about it or “hope” it won’t happen to us. But hoping never prevented anything. Life happens. So does sickness and death. You’re right, we should be prepared.

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  15. Listening and working with my mom as she’s gone through planning for her ‘end of life’ (she’s 81) has been eye opening, heart breaking, scary (as I come face to face with my eventual death), and a somewhat comforting experience. Her lack of fear (at least as far as I can tell) is taking away a lot of my own and it’s nice to know what her wishes are while she’s still coherent and able to convey them.

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    • That is so great. My own mother did not do that. I had to beg her to do a will and it was handwritten two weeks before her death. She waited too long to move into a more senior friendly house so her only bathroom was on the second floor. I don’t think she was afraid of dying but I can’t explain her lack of planning. She wasn’t like that about anything else.

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