In all my years of keeping this blog, I've relayed my victories, frustrations, and opinions. I have tried not to be a whiner, attempting to see issues with an eye to the humorous. I've never set out to defame anyone or deliberately hurt anyone; I've never prevaricated details in order to pass them off as truth. (There are people and things that I haven't talked about in order to prevent just those sorts of things.) And I've never really imparted any of the moments of my deepest despair, of which there are many. (Even I, talker that I am, realize that words often do not do justice to what we feel deep within.)
Having said all of that, I'm going to talk about a family member in this post. I hope my sister understands! This is about her husband of 54 years, my brother-in-law since I was in 8th grade...the father of my two adult nieces, grandfather to five, and great-grandfather to five--plus some "steps" in there. It's been a long run!
Let me begin by saying that I love Roger. We haven't always seen eye-to-eye on things, but he has been a good provider to my sister, and I think he loves me, too. Roger has, however, never been a particularly easy person to live with. He was adopted as a baby in Canada. If that influenced his life/thinking, we will never know. Suffice it to say that he measured his success in dollars rather than relationships, and did not take perceived rejection or criticism well. He was demanding and (yes, I'll say it) emotionally abusive to his wife and children, at times, with temper tantrums and ugliness that went beyond the situations that created them. For years, I said that my sister was either a saint or a dummy for putting up with him, but she always managed to get through.
Why am I speaking about Roger in past tense? Roger is no longer Roger. Not even the Roger that we had all learned to tiptoe around. After he retired, he started getting professional help for what was labeled as "depression". ( I'm more inclined to think that he had anxiety issues that were morphing into OCD, but he was put on depression meds and monitored by a psychiatrist). This was his choice, although my sister wasn't supposed to talk about it to anyone because he felt it was a fault. It didn't seem to help, and slowly, he began to lose words. His memory was failing, so his "shrink" sent him for a brain scan and referrals to other doctors. The scan showed that one of his brain's frontal lobes was shrinking...much smaller than the other... and he was diagnosed with FTD--Fronto-Temporal Dementia, with Primary Aphasia. (Aphasia means failure to understand or remember words.) This diagnosis was given in 2011, with the admonition that it could quickly turn into Alzheimer's Syndrome. (These days, everyone with dementia is said to have Alzheimer's, which is far from the truth.) Roger's descent into dementia has been slow but steady, but in recent months, his decline has sped up. He knows what is happening to him; I think he is terrified.
My sister, God bless her, has been challenged with dealing with his moods, which range from wanting to go out to eat every meal, to saying he is dying several times a day...calling her names because SHE isn't able to get him in to see doctors as quickly as he wants (although no one can ever find anything physically wrong with him). He threatens to kill himself almost daily--everything from freezing up in the woods to deliberately wrecking the car. (And yes, he's still driving.) More and more, Shari is discovering that he gets befuddled when she isn't where he thinks she should be, and more and more, she is trapped. Roger is now like a retarded toddler who wants what he wants when he wants it. Childlike. Unforgiving. Shari is doing the best she can to manage, because she always has.
If Roger were truly into an Alzheimer's state of total oblivion, it would be merciful. Not so. He still functions remarkably well with money and puzzles...lots and lots of puzzles. (In fact, he can finish a sudoku puzzle in one-third the time that I can.) But life isn't all about money and puzzles. My sister is in this life totally alone now, except for the somewhat limited help that one of their daughters can provide. She is planning to come here in a couple of weeks for a few days of respite. She needs that!
Society talks about moral support for caregivers. Ha! Log onto any dementia site on the Internet, and what you will find is what to expect from your dementia-affected loved one...NOT how to cope with each new development. In all of Springfield, IL--the state capital, for Pete's sake--there is no support group to join or any way to know when it is time to take away the car keys, get the Power of Attorney, or have a backup to let you know that you are doing the right thing. Basically, the lunatics run the asylum. Caregivers must get by with trial-and-error...and I'm here to tell you that it's a scary road to follow.
A few days ago, Roger had an appointment with his memory doctor. It was determined that he had slipped in the cognitive part of his tests, to the point that he will probably be reported to the state to make sure that his driving skills are tested. His doctor wants him to wear a bracelet or necklace identifying him as mentally impaired, and it was recommended that my sister consult with an attorney "soon" to get Power of Attorney, etc. She is reeling. None of this comes as a surprise, but now it is getting more critical, requiring things that are going to tax her more than she is already taxed. Truth: I'm not sure if I feel sorrier for the sufferer or the caregiver. Nobody wins.
FTD has robbed my sister and her husband of their "golden years". They have means. They could be touring Europe or living in the lap of luxury in Florida were it not for FTD. I hate this for them. We simply don't know what is around the corner for us, do we? Once upon a time, I envied the daylights out of them for their social contacts and fun excursions--snowmobiling, boating, traveling, partying, and just having fun. Now? I would not trade places with them for an instant. I love them. I pray for them. I want everything to get better, knowing that it won't. The progression of the disease is that it will only get worse before it is inevitably over. In the meantime, dealing with the sometimes-combative nature of a loved one wears on the soul.
Trying to make sense of Roger's thinking is trying to make something irrational into something rational. It just doesn't work. We can try to understand, but his mind doesn't operate as normal minds do. What is a family to do??
To my sister: I care. Words fail. God provides. We'll just have to continue to figure things out as we go along. Thank you for trying to preserve this man-child's dignity when he sometimes embarrasses the daylights out of you.
To the rest of my blog readers: If you are a caregiver for someone with dementia, learn to ask for help. If you merely know someone who is a caregiver, drop by for a visit. Sometimes it is nice just to be able to have a normal conversation with a sane person, even if the only topic of conversation is the one in need of care.
God bless you all!
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