Hey, Brother

We went home to southern Ohio for a visit Valentine’s weekend. David’s elderly parents live there still. It’s where we both grew up, and we have strong ties there, although not as many as in years past. My parents died long ago, and as we get older, both families dwindle. The only close family I have left there are my brother, his six children, and their extended families; my niece (my oldest sister’s [now deceased] oldest daughter) with whom I have a very close relationship, and her family; and assorted cousins.

My brother Everett, called Buddy by the whole family, is 81. He’s almost 20 years older than I am. My sister Judy and I have been concerned about his health. She calls him pretty regularly (I’m not as good at that as she is), and he seems to be declining, physically and mentally. We were so used to seeing him strong and healthy, and hearing his big, booming laugh, telling his corny jokes, and lovingly teasing both of his “little” sisters. His family is very close-mouthed about things they consider “family business”, and that includes health issues. Judy and I have been suspecting for some time that Buddy may be in the early stages of Alzheimer’s, but hoping that we were wrong.

This summer at our annual Hart (mom’s family) reunion, always held at Buddy’s house, because it is the Hart homeplace, Buddy was very unresponsive to what was going on around him. He just sat and listened with kind of a slack-jawed expression on his face. Still, none of his kids shared any information with us.

Finally, a few weeks ago, after a phone call where Buddy was so confused that it was impossible to carry on a conversation with him, Judy decided to contact his oldest son’s wife Brenda. Brenda confirmed what we had suspected, although she said that her mother-in-law was in denial, and forbids anyone to talk of it. She’s a very devout Christian, and I suppose she thinks that if she prays hard enough, all will be well. She is also in denial about her own health. She has been frail for the last two decades, and has what she calls “sinking spells.” (She’s also very old-fashioned.) Brenda told Judy that Gloria has epilepsy (Brenda’s husband [Buddy and Gloria’s son] also has it…since he was 18), but she refuses to call it what it is. This is one stubborn woman to be as quiet and reserved as she is.

Before visiting on Saturday morning, I called Buddy’s house to ask if it was a good time. My niece Melissa (Missy) answered the phone, and said she would ask if it was okay. I was a little taken aback, because usually I get a hearty go-ahead. I knew that on  Saturday mornings some, or all, of the “boys” come to cook breakfast for their mom and dad. Missy said that Paul (third oldest) was there. She consulted with her mother, and I was given the okay.

When we got there, husband and toddler in tow, and after our hellos, Missy took the toddler and me into the living room, ostensibly to settle Joshie with his toys. She apologized for having to ask permission for my visit, but explained that her dad has good days, bad days, and some very bad days, and her mom is very protective, and doesn’t want anyone to see Buddy at his worst. She filled me in on some of the details. How they don’t ask him questions anymore, because it tends to confuse him. For example, instead of asking him how he’s doing, they make a statement like, you’re looking good today, Daddy. She also said that when any of them call and Buddy answers the phone, they don’t make him guess who is calling, and explain right away who it is.

They’ve taken away the car keys. Buddy had an incident a few weeks ago where he drove to town and forgot where he was and how to get back home. Luckily, it’s a small town and everyone knows him, so they called one of the kids and they came to his rescue. An even scarier incident happened in the middle of the night. Gloria called their daughter, Edie, who lives a half-mile down the road from them, and said Buddy was trying to make her leave with him, and was pulling her out the door in the freezing weather. Edie and her husband were there within minutes and stayed with them the rest of the night. But, what if Gloria wasn’t able to reach the phone? It must have taken all of her strength to keep Buddy from pulling her outside, until Edie and Mike got there.

That is now the dilemma that all of them face. Missy said they didn’t know what they were going to do. The kids and grandkids all check on them several times each day, but it’s only a matter of time until they need someone to be with them full-time. Someone will either have to move in with them, or Buddy and Gloria will have to move in with one of their kids, or they will have to move into an assisted living facility. I can’t really see the latter happening. The family all worships them, and they will probably fight over who is going to take them into their home.

It’s so sad to see my vibrant, wonderful big brother’s existence fading. I don’t know what to do, other than try to be a better sister by calling more often, and visiting regularly. I hope he doesn’t forget me too soon. I want to hear him call me “young-un” for a long time.

13 thoughts on “Hey, Brother

  1. My mother’s affliction with Alzheimer’s seemed relatively easy compared to this, Susie. It just sounds like a horribly difficult situation, although the one very positive thing is that your brother has lots of family, and they aren’t running away from this. Your sister-in-law’s way of trying to deal with it hurts my heart a bit – for her, mostly. Denial is a prison of sorts, and pride her gatekeeper.
    Don’t beat yourself up. Do what you can, and know that there are others who are there for him. He’s lucky for that, at least.
    What a sad story.

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    • Deb, this is the first time I’ve ever had to see the face of this awful disease in person. I’m not sure why my sister-in-law is reacting the way she is, but each individual deals with tough times in their own way. I think she’s doing the best she can. It must be extremely difficult to see the one you love most in the world, the person who has always been the rock in your life, start to slowly disintegrate in front of your eyes. It’s sweet, the way she gently prompts him when he can’t finish a sentence, or think of the right word to say. She never seems to lose patience with him, but, of course, I only see them for a few hours every few months. Though, I don’t really think she would be any different with him when there isn’t anyone else around to see. He has been on a new medication very recently, which seems to be helping some. He seemed to know who I was when I visited, after I was there for a bit, and he even made a couple of little jokes.

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      • When I think back to that first while when things started to go awry for my mother, I remember feeling quite at sea. Not knowing quite how to react, unsure if what she was saying was actually true, wondering how much of her was still ‘there’, and having a really hard time accepting that she wasn’t going to recover from it. That nothing you could say or do would bring her back to rationality. It’s hard to watch, for sure. Your brother is extraordinarily lucky, really. Your description of the family closeness and their devotion to him is really quite wonderful. And his wife has exactly the right approach – I read an article a while back on how reminding someone with dementia that they have a) already asked that question b)done that thing c) forgotten something etc etc creates stress on both sides, and tends to make dementia sufferers much worse off. Makes sense. But I think it is less common for someone to react as your sister-in-law is doing – to be gentle and not bring up what’s going wrong. P and I have talked about this a lot, as I wonder what the future might hold. Better to try and be prepared for anything, I guess.

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  2. This is such an awful disease. My uncle had it. There comes a point when it is very difficult to care for the family member at home. It sounds like you brother’s family is committed to caring for him, and there are a number of them. That’s so important. You need a deep bench to keep any one person from bearing all of the responsibility and stress. It’s so hard to watch someone you love drift away. I’m so sorry.

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    • Bella, I’m not sure how I’ve lived this long, and not have had anyone in my family have Alzheimer’s. To see my brother and his family having to face it is hurtful. They’re such good people. I know that his six kids, and his grandkids, will not let him go to a nursing home. They are all extremely devoted to him and their mother, and they are all very supportive of each other. Thank goodness for that. I just hope, for all their sakes, and if the end is inevitable, that it isn’t too prolonged and painful. Buddy wouldn’t want them to have to endure that.

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  3. This is so sad. I’ve known of friends with Alzheimer’s family members but none personally. I suspect that will change in a few years. (In fact, we have one friend who may be in early Alzheimers but the diagnosis hasn’t yet been made). So, I don’t know so much what I speak about except to say that I have heard it is a heartbreaking disease and I feel for you to see this happening to your brother and only being able to help “so much.” All the harder with the denial of his wife. But it sounds as though he must have been a wonderful dad because his kids are certainly taking on a lot and seem very glad to do so, even knowing how hard it is and will become. (Perhaps even harder, because of mom, too.) I admire them. I admire you, doing all you can to help from afar. They’ll need to really cover the bases but it appears that they are all on the same page and that is a gift. In a sad time, it’s a gift one needs.

    What a wonderful family you must have. Although my dad didn’t have Alzheimers, when it came to care, I didn’t have siblings or a back-up team. They are fortunate in that, for they are taking on a big job. Call often, visit when you can, try to find whatever way you can to make things easier for the caretakers — a gift card or surprise flowers or even a little note or card. And if he likes music, make sure he has it. There have been some studies on music and Alzheimer’s. And even if there weren’t — it’s still a good thing!

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    • Jeanie, he has been a wonderful father to all of them. Stern, but loving, and a strong moral compass. Thank you for all of your suggestions. I know it’s just as important to take care of the caregivers as it is the patient in these kinds of situations. I don’t know how much outside support there is in their area, and how much they would be willing to accept. I’ll talk to his oldest daughter, and see if they’ve checked into area resources.

      I’ve been hearing about the use of music therapy with Alzheimer’s patients, and what a profound effect it has had on some of them. I’ll find some links online and send them to my niece to read. I know he loves old-fashioned gospel music and some blue grass, so maybe it will help him. I’m in charge of the family photo albums that belonged to our mother, and I was thinking about taking a couple of them with me the next time I visit. I know that sometimes they can relate better to the past than the present.

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    • Thank you, Natalie. I hope the family won’t find the road too difficult. I’m just glad that there is a strong support system there, not one weak link among them. So rare in this day and time to see that, and for all of them to live so close by that they can support one another.

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  4. There were two periods when we were sure my mother had Alzheimer’s, but we were “lucky.” The first episodes were a result of overmedication by an idiot doctor. We moved her from Iowa to Kansas City, to live with her sister, got her a new doc, and it was all good. Later, once she was living here with me and started acting strangely, it turned out Alzheimer’s was wrong again. She wasn’t getting enough oxygen to her brain, and a pacemaker did te trick.

    Which is to say: I’ve never had to deal with it, but have had a glimpse of how terrifying and stressful it can be. There are some wonderful Alzheimer groups around here, where patients get together with volunteers every week or two. It provides social contact, in the context of an environment where people understand what’s going on. If your SIL can come to the point of acknowledging what’s going on, things like that may help.

    Have you read “Still Alice,” or seen the film? I haven’t, but a friend who does Alzheimer support work says its really, really insightful and true to life.

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    • Linda, we had the same issue with our mother—the overmedication by an idiot doctor. Unfortunately, we believe that it ruined what was left of her good health, and it was downhill from there on, but that was a lifetime ago, 1987. Mom took care of her elderly mother for twenty years, and she had always firmly stated that she didn’t want to live long enough to be a burden to her children, and, bless her heart, she didn’t. She was only 72 when she passed. We would gladly have had her be a burden for her to have been with us for many more years.

      As I said above, I’m not sure how much outside help they will be willing to accept. They tend to close ranks when there’s an illness among them. This, though, is an entirely different situation than anything they’ve dealt with before, so maybe they will be a little more open to outsiders.

      I haven’t seen or read “Still Alice,” but I’ve heard really good things about it. I was glad to see that Julianne Moore won the Oscar for her portrayal, and hopefully it will shed more light on the subject. I will probably wait until I can watch it at home. I have a feeling that it’s a multi-handkerchief movie, and I prefer to do my sobbing at home.

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  5. I have not seen Still Alice but a friend whose mother died after a long period of suffering with this disease did see it and found it heartbreaking but cathartic. I found your sharing of this so straightforward yet sensitive to all of the family members. Every situation is so incredibly nuanced and complicated with no easy or obvious solutions, which makes the telling of each story critical.

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    • Mary, you are right about every story being its own. The disease is so devastating. We did finally go see Still Alice, and it was heartbreaking to see this still young, brilliant woman being so quickly struck down in the prime of her life, and there was nothing they could do to stop it. And for her children who inherited the gene from her to know that there is 100% certainty that they will also have this awful thing to deal with in their not-too-distant future is just horrible. That was something I didn’t know about early-onset Alzheimer’s disease. It’s just so sad.

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