Both of my parents have some serious health problems. My mother has emphysema and diabetes, my father has myasthenia gravis and Alzheimers. Both of them are doing OK presently, but both have come very close to dying in recent years.
My father’s memory is getting worse rather rapidly. I found out recently that my mother told my wife that she hopes that he dies first because she doesn’t want us to have to be wholly responsible for taking care of him should she die (they are moving in with us later this year). My mother still has her full mental capabilities and makes sure my Dad takes his 16-18 pills every day. In the past when she was hospitalized, before we knew the extent of my father’s deteriorating mental condition, he got very ill himself because he would take too much of his medicine because he forgot he already took it.
I’m finding myself agreeing with her, but for different reasons - I’m afraid that if she dies first my Dad might not remember that she’s dead. If she went today he’d probably remember - he forgets a lot of day-to-day stuff, but he’s still able to remember important stuff (my Mom says that about the only recent thing he remembers from day to day is that they are moving in with us soon). But I’m not sure if he would in the near future.
I don’t know if I could handle telling my Dad every day, or possibly several times a day, that his wife of nearly 50 years is dead, and I’m sure it would be extremely depressing for him to have to deal with the first day of mourning every day. Should things unfold the way I think they might (she seems to be in worse physical health than him), would it be wrong to tell him she was visiting relatives out-of-state instead?
Unfortunately, it will be just like that movie Groundhog Day - You will end up trying all possible strategies and none will seem right the next time.
My grandfather got so bad at the end he was repeating the same story about coming to America on the boat as a child every 20 minutes! I kept telling him he was repeating, and feeling bad when he was obviously pained by the news. I was so afraid I had shamed him for something that wasn’t his fault. But 20 minutes later he had forgotten the shame, the pain, and that he had just told the story, so I got it again and again until I had to leave.
Badtz, that sucks, and (fwiw) you have my sympathy.
I have a friend who is suffering with lung cancer, and he’s re-evaluating his life right now. From being quite an abrasive, self-centred sort he has changed completely, and is living by his new creed; ‘do no harm’. The more I think about this the more I like it.
If I were in your situation, I’d have no problem in telling your father that your mother was away. It would be an act of kindness.
Another thing that sucks is my Dad was always one of those people who was resolute in not wanting to be a burden. The first time he was hospitalized was when he choked on some food, probably because the muscles in his throat or esophagus were weakened by the myasthenia. My Mom use the Heimlich to clear his airway, but he had lost consciousness by the time the ambulance showed up. He woke up and was breathing fine by the time they got him to the hospital, but they wanted to put him on a respirator (standard operating procedure for people with MG). He always said he didn’t want to be put on a machine and it took five people to hold him down so they could get the tube in him (doesn’t seem like someone so weakened they can’t breathe on their own, does it?). He wanted to file a Do Not Resuscitate order but my Mom and the doctors talked him out of it, and I’m sure he’s forgotten about it by now. Anyway, I know that the father I knew before his mind started to deteriorate wouldn’t want to live in his current condition, but in his current condition he doesn’t really realize how bad his memory is getting (in part due to my reassuring him that it’s normal to get a little forgetful as you get older) and he seems pretty happy most of the time. If my Dad circa 1996 could see how he is today he would want someone to kill him, and I would risk it if I didn’t have a family of my own now to support. I actually feel like I let him down by letting him get to this point.
I’m not qualified in any way to give advice, (though I think I understand in some way your dilemma) but that said, if your Dad is pretty happy most of the time, then I’d focus on that.
Shoot. I don’t know what to say, really. Everything sounds a bit trite in the face of your situation.
Badtz, I hate to completely pull this thread a different direction, but it’s a question that I really want to make. Has your father ever written or related any family history or personal experiences to you or any siblings you have? I’m really sorry if this sounds callous or insensitive, but my grandmother just wrote a huge collection of memoirs, and is an incredible gift to our family. If there’s a way to coax any memories out of your father, that gift of history would more than compensate for the potential hardship that you related in the OP.
Also, you say he takes 16-18 pills a day. When was the last time a doctor reviewed ALL his medication? I ask because my mom was doing the same thing, and a doctor ended up taking her off a couple pills because they were causing some forgetfulness as side effects.
UNFORTUNATELY: it didn’t cause ALL the forgetfulness. We’ve since established that she’s having micro-strokes. Result – Alzheimer’s like forgetfulness without the emotional upheaval. It’s frustrating and frightening: I remember just before I got married talking to her on the phone about the wedding plans. “And sister will stand up for me, and I’m asking brother to stand up for me, too.”
“That’s nice. What about caircair, tho? She could sing, I guess, but it’s been so long…”
“Uh, mom, she’s the bride.”
Horrible as it sounds, and horrible as this thought makes me seem, I’m glad I don’t live in the same city as her. I couldn’t handle this on a day-to-day basis.
Hey, Badtz, I just wanted to chime in with my own story and tell you not to feel guilty or think less of yourself for the thoughts you’re having and for not doing what you think your father might have wanted. It’s totally natural to want to prolong your loved one’s existence, to keep them around you for as long as you can–but it’s also natural to feel like you want to end their suffering, to end what they don’t even know they’re going through, to want to end what YOU are going through. I had similar feelings when my beloved Grammy got Alzheimer’s.
It started 18 years ago, when she was 66. She died last year. The first time I noticed something was wrong was when I spent the night and when she made me breakfast in the morning, she buttered the bread before she put it in the toaster. The toaster caught fire and she started crying. Being only 10, I didn’t understand why she was so upset at the time, but now I know it’s because she was starting to realize that something was going wrong. We went through different stages, where she knew and was horribly upset, where she didn’t know anymore and was happier, where she forgot most of our names, forgot that she knew most of us. She still knew Gramps, Mom and me.
When Gramps died of heart failure, we told her but she was unresponsive. Most of the time we were unable to communicate with her and know she understood but sometimes there were moments. She would ask where he was and we didn’t have the heart to keep telling her he was dead. We just told her he was gone instead. A month after Gramps died, my mom was diagnosed with pancreatic cancer. She died four months later. We told Gram but I don’t think we ever got through. It was so hard to tell her that her husband and daughter were “gone”. Eventually she stopped asking even for them. By this time we had her in a full time home and one day I went to visit and she didn’t know me. Not like other times, when she would say, “I know I know you but I don’t know who you are.” This time there was no recognition in her eyes. She didn’t respond when I talked to her, she never spoke. It was as if I wasn’t even there…or she wasn’t. That was 1997. She stayed in the nursing home for the rest of her life, her body perfectly healthy, her mind all but gone. When she died, it was a relief. We were no longer suffering, and if she was in that body somewhere and knew what was going on, then I’m sure she was relieved too.
I don’t mean to make this about my problems, either…what I’m trying to say is that you are facing some hard choices and there is no right answer. With my Grammy, we knew she didn’t understand after a while, so we told her what made us feel ok. We always tried to look at what she would want us to do. We know she didn’t want to be a burden and there didn’t seem any harm in just saying Gramps was “gone” so that’s what we did.
I guess I just want you to know that there is no “right” way of dealing with things like this. Be sure to discuss it with everyone involved and do what you think is best. And don’t feel bad about the way you feel. My thoughts are with you.
Badtz, I sympathize with your plight. My grandfather died several years ago after battling both Alzheimers and Parkinsons. When he got to the point that he could not remember that his wife had died, the family simply told him that she was “away.” It wasn’t a lie, exactly, and it was simple enough that he could comprehend it, even when he became severely diminished. (He had basic understanding up to the end, but his memory retention and higher “processing” functions declined on a daily basis.)
More importantly, when we had to put Grampa into a care facility, the staff were sympathetic and were all able to remember to just tell him that Viola was “away.” If we had concocted some grander story about where she was and when she’d be back, there’s no way that the staff could’ve handled it.
As a side note, I can’t say enough to recommend that if you become a caretaker for your father that you involve yourself in a group that gives support to families of Alzheimer’s patients. Having professional support during the end of my grampa’s life, even after he was in the care facility, undoubtedly preserved our sanity, and helped us tremendously in dealing with the grief that his debilitation and decline brought about.
Take care, you and your family will be in my thoughts and prayers.
On a side note, there was a thing in Parade magazine this weekend that mentioned that they haven’t told Ronald Reagan that his daughter died yet. I guess they don’t feel he could handle it.
Badtz,
Believe it or not, my husband’s family went through this EXACT same dilemma with his cousin, a woman of 30 who had a brain annurism. (sp?)
She came out of a coma with good long term memory, but little or no short term memory. She behaved exactly as you describe your fear- you would tell her something and it was all brand new, even if she had just asked 5 minutes ago.
The problem was, her beloved mother had passed away the prior year and she could not remember it. It think they told her three times total before they couldn’t take it anymore. Every single time it was like telling her for the first time and it was gut wrenching for her and the family. They told her that she was away on vacation (or something) and couldn’t wait to come home.
A few years later she regained her short term memory, and people told her that her mother had passed away. She didn’t remember the deciet, but I am convinced that she would have understood, since they were saving her near constant grief.
Thanks all…and I don’t mind in the least if anyone wants to use this thread to get out their problems.
They reviewed his medication a few months ago and changed some of it, and it improved his mental function somewhat - he was slightly less forgetful, and a problem he had been having where he was having very vivid dreams and thinking they really happened mostly went away. One problem he still has is he is in a sort of constant state of deja vu - we’ll take him to a restaurant he’s never been to before and he’ll insist he had been there before. That’s not so bad, I guess, but it’s just another reminder of the fact things aren’t working right in there.
As to getting family history, our family has always been interested in that stuff and I’ve always taken an interest in my fathers life - I’ve memorized a lot of his personal history, very interesting stuff. He’s also still very knowledgeable about a lot of subjects (he’s a genius, taught English Literature and Drama, has lots of Chaucer memorized in the original Middle English). He still remembers stuff from long ago perfectly well, it’s just recent stuff that he can’t hold on to.
I’ve always enjoyed reading your posts in the past, and in this case wish I had some magic words for you.
I can sympathize with your situation. The tenet of “do no harm” mentioned above is a nice guiding principle. Another avenue for you to consider is to go back again to the intellect and philosophies of your father: what would an intelligent, thinking person do in this situation?
You have a unique opportunity here: if the only person he has relied on for care and comfort over the years [your mother; she is unique to him in this regard] will no longer be there, then simply make it your priority to be a comfort to him in all situations, much as our instincts are to comfort our children. You can do a great service to him by many daily reassurances when he is confused or forgets; in effect, becoming a parent to him. While this role reversal is tremendously sad, remember that you are doing a great service to him and think of it as a privilege to repay him for all the time he invested in you.