Dementia Changes People, But People They Still Are
By Paula Spencer Scott, Caring.com senior editor
Dementia changes personalities. We all know that. It's natural to mourn the person who once was –- but it's also, I'm afraid, easy to get stuck in that mode. To mostly see what once was, without a full appreciation of the value and pleasure to be found in the altered person who sits before us today.
I was reminded of all this at the recent memorial service for my late dad (who had dementia, though he died of renal cancer). I'd never really thought about the many, equally valid ways of seeing him until I listened to the different reminiscences brought forward that day.
First, we saw a tribute video that my brother John had created. It showed the arc of a man's life, from big-eyed boy on a tricycle in the 1920s through dashing groom, family man (of an ever-growing family), and retiree and widower.
Then I gave the [eulogy] (http://www.caring.com/articles/eulogy-for-sylvester-patyk-by-his-daughter-paula-spencer), retelling the highlights of his life, albeit from the perspective of a middle daughter. An excerpt:
"Our growing-up years could have been a wholesome '60s and '70s sitcom – complete with laugh track, since Dad was pretty funny. "Act natural!" he'd say when he sprang on you with his ever-present camera…and then fiddled so long with the lenses and settings that the spontaneous smile on your face froze -- or you cracked up. Every Father's Day, we actually believed he was thrilled to get the same tie, box of chocolate-covered cherries, golf tees, and Old Spice soap-on-a-rope: 'Gee! Just what I wanted!'">>
Those long-view life stories captured the dad I knew best. But at the point in the service where others stepped forward to share reminisces, many described the tail-end of Dad's life:
A member of the Methodist congregation my staunchly Catholic dad had visited over his last years while living with my now Methodist brother spoke about how friendly he was and how happy he seemed to be there.
One of the hired elder companions shared how when she'd park in a handicapped space so he wouldn't have to walk far (he was verrrrry slow at the end, the result of a stroke), he'd invariably say, "You're parking in a handicapped spot? Okay, when I get out, I'll limp!"
And at least three of his 14 grandchildren fondly told stories about how he told the same stories over and over again, and asked the same questions over and over. That was how they knew Grandpa, the sweet funny guy with the faulty memory stick.
After the service, too, a nurse at the nursing home where he spent his last four months in stroke rehab – the nurse he'd described on his deathbed as having "the face of an angel" – came up to tell me how sweet and dear he'd been. When it was clear he was dying, she'd fled to weep.
So at a time in his life when those who knew him forever were mourning the "old him," many people were still meeting and enjoying this brand-new him. ([This post] (http://www.caring.com/blogs/wise-care-for-older-patients/twelve-advantages-of-being-old) is a sweet reminder of how doctors who treat the old see this all the time.) I know I knew, on some level, that Dad was still funny and sweet even if he was diminished and forgetful. But it was very hard to set aside the robust dad I missed. For spousal caregivers, this can be near-impossible.
I'm sharing this long-winded tale to tip my hat to those who can set aside their grief over the person who was to more fully enjoy the person who's left. It's hard. But it helps.
I appreciate the feedback on this post in particular. As to your question, chrisd: It was my late mother's wish, before we knew about *her* cancer, that my dad not be aggressively treated for his renal tumor, partly because of the progressive dementia and partly just the surgery to get a biopsy was incredibly hard on him. Meanwhile he was in no pain and continued to do all his normal everyday activities -- really for the next two years almost right until he died at 87.9. He bowled, enjoyed his grandchildren, took it easy, and at the very end received great hospice care to remain comfortable. In his case, we all agreed that aggressive treatment of the cancer would have compromised his quality of life which seemed more important than prolonging it at any cost. But it's a hard calculus for each family.
Wow Paula--your dad sounds so much like mine! My Dad is 81 and we lost our Mom almost 9 months ago. Dad lived with us for almost 5 months and then wanted his own place, so he moved into an assisted living residence. He still attends a day activity program three days a week which he enjoys for the singing opportunities it offers. In the past 6 weeks Dad has declined considerably cognitively to the point that he has an aide with him in the am for adls and then again from 430-9p when his confusion gets worse/sundowning. without that he would sleep mostly. he has also been fighting bladder cancer for 3+years and we recently found out that it has moved to the muscle and will soon find out if his lymph system is also involved. He is incontinent. While we know a major surgery (removal of his bladder) is not what would be the right choice for him, we were considering radiation or chemo and yet the side effects of both of those can be so negative, we don't know what to do.. i want him to enjoy life as much as possible, since he's so tired as is, i can't imagine how sleepy he would be from radiation--our mom went thru it so we have some experience with it. If you or anyone could comment on loved ones with alzheimers who also had cancer and their experiences, i would be grateful! Thanks!
I am the POA for my Mom, the last of 4 parents for my wife and me. My Mom has dementia but is still able to stay at home with multiple care givers and insurance coverage. It is hard on the family though. It is stressful and difficult to make the right decisions for her care, especially when there are multiple opinions (some medical, some family, and some friends) about what is required for her care. As POA, I have to make those decisions. I pray and ask my Lord for wisdom and guidance to make the "right" decisions for her care, but I also need understanding in my circle of acquaintances (this "but" part maybe too much to expect). My Mom is close to 90 and has lived a wonderful and full life. We lost my Dad in 2007 to cancer after he and my Mom were married for 69 years! I promised him before he died that I would be there for her and I WILL fulfill that promise! I appreciate this website and the comments of other dementia/Alzheimer’s caregivers. I will be back - it helps to have an outlet and hear what each of you is facing daily. I will add your names to my prayer list. Our parents took care of us when we could not take care of ourselves - now it is our turn!!
Thanks Paula. Posts like yours are why I joined this group. My brother can't face my Mom very often, so I'm all she has. I go to visit her in her assisted living place 3-4 times a week, and I try not to get irritated with her that she isn't my Mom anymore. In fact, she tells people that I'm HER Mom now. I have 4 teen/young adult kids, a loving husband, a part-time job, I write romance novels in my "spare" time(gotta love those happily-ever-after endings), and still she says that I don't visit her often enough...she misses me when I'm not there. She's only 79, but her macular degeneration has robbed her of much of her sight, and dementia is taking her memories. I've had to start helping her shower once a week, I try to pick out her clothes or she wears the same things day after day. I miss my Mom, but know that I'm about the only one she still remembers. It's a lot of responsibility, handling the finances, bringing her cookies and chocolates so she'll eat something...and I'm always afraid that I'm not making the right choices on her medications, but there's no one else to talk to who will help me decide. I hope I'm doing right by her. The caregivers tell me that I'm keeping her "grounded", at least for now. They tell me I have to relax around her, and "live in her world with her", when I'm there. No one really can understand what this is like, until they are dealing with it. Thanks for giving me someone to talk to, who knows.
Oh, goodness, Paula, you have me in tears. What a great guy!
One again thanks Paula. Thanks for sharing your family with us and your father. Jeff
My family is just now deciding on nursing home care for my mom. We are thinking that after Christmas she will be in her new home. It breaks my heart to not have my mom the way she was but this article reminds me of the funny, loving, person she still is at times. Thanks for sharing your story.
Thank you for this moving article -- it was just what I needed at this moment. Bless you for all you do for the readers of Caring!