Wish You Could Find a More Positive Attitude? My Dad’s Last Lessons
By Paula Spencer Scott, Caring.com senior editor
Some days as a caregiver, it can be a struggle to keep anything close to a positive attitude. And yet, the bennies of a positive mood include a tougher immune system, less inflammation, better cardiovascular health, and – key! -- a safeguard against stress and caregiver burnout. Still, thinking on the bright side isn’t always easy.
Here’s one small exercise that might help: Think about what you’ve learned thus far on your caregiving journey (even if you’re still a newbie). What didn’t you know when you started that you do now? What three things would you tell someone else?
Sharing your knowledge helps others, lifting spirits.
The lessons (large and small) of caregiving are on my mind a lot this week because of my Dad. Dad, who had dementia and stroke, ultimately died of renal cancer one year ago this week, just shy of his 88th birthday.
In his health, he taught me how to drive, to measure evenly, to love the Michigan north woods. (He also tried to teach me about checkbooks and changing tires, but failed, through no fault of his own.) In his declining health, he taught me other important things, though inadvertently.
Here are just three. I wish I’d known…
1. ...that it’s usually later than you think.
Most people think dementia isn’t as far along as it really is. Like most families, we were long in denial about my Dad’s memory lapses and terrible driving. (A recent Caring.com survey found that 61 percent of caregivers said the actual diagnosis came one to three years after the first symptoms.) The same could be said for every stage of his decline. I wish I'd learned more about the possible trajectory of every condition, right at the outset. Lesson: Peeking ahead is scary but incredibly helpful; it allows you to plan and feel more in control.
2. ...that doctors don’t know everything.
At the start of both my parents’ final health crises, I still clung to the notion that health professionals would “know” what was wrong and how to fix it. They often don’t. I wish I'd been more assertively part of the team of care from the get-go, to best work with physicians to pick through options. Beware: As your web of specialists, hospital staff, and private docs grows bigger, communication snafus increase, sometimes causing more problems. Lesson: You have to insert yourself at the center of curing and caring.
3. ...that it’s okay to measure quality of life by different yardsticks, as we get older.
I used to complain that my parents’ lives were “getting smaller.” But in retrospect, just because they cared less about headlines and international travel didn’t make them less interested in love and simple pleasures. My dad spent the last year of his life mostly playing cribbage (increasingly badly), petting his namesake cat Sylvester, and watching TV or grandchildren at play. But he was always happy to see me -- even when he wasn’t exactly certain who I was. I wish I'd caught on sooner to let go of the pain of not being recognized and entered the elemental joy of companionship. Lesson: Try harder to just be in the moment.
These realizations made me feel better then -- and they still do every time I mention them to a friend or colleague in similar straits. And I'm glad to share them here. But with the web, we all have a forum. You can share your wisdom at the bottom of most Caring articles you read. You can give your ten cents to someone in a forum. If you’re a dementia caregiver, by enrolling in Steps & Stages you get automatically connected with others facing a similar stage of Alzheimer’s.
Or get a mini-mood boost from helping others right now, by sharing right here: What’s the #1 thing you wish you’d known at the outset, that you learned by doing?
Absolutely wonderfull advice! Especially "just being in the moment". It's sooooooo important as a caregiver to live in the same time frame "one day at a time" with your loved one. It give both of you comfort! Prepare for the future as best you can, but live today for today.
I have learned that my Dad lives in the moment. He usually enjoys what is happening, but won't remember it in a few minutes. The other thing that has made my life easier is to live and work with him in his reality. If he thinks we are traveling to see Aunt Jane, when we are actually returning from a doctor's visit, we talk about Aunt Jane. If he is still on that track by the time we reach the nursing home, I tell him we are stopping here and will go on tomorrow. Of course, by the time we get inside, Aunt Jane is forgotten. He frequently packs his walker with things and piles his bed with clothes etc..., as he is moving out (home or where ever). When I come in I react as though he is moving in for a SHORT while. I tell him I thought he would already have these things put away by the time "I got back". I love his responses. It is always someone else,s fault he has not finished unpacking. I then help him move in by putting things back where they were.
I couldn't help crying as I read this artical. My husband passed away last December and everything you mentioned, I went through in 1 short year. Things happened so fast that I really didn't have time to think. When I look back now, I am amazed at the things that I did. It took it's toll, of course, I'm only now beginning to feel better physically. I have only admiration for anyone going through this.You are all in my thoughts and prayers.
Hugs Paula Spencer Scott
I wished I'd known that I can be right even though I don't have the medical training to back me up. Because I'm around her most and spend so much time observing her I've been able to notice and diagnose things that it took others (medical and family) a long while to finally see. I often second guessed what I saw because I didn't have the 'training" others seemed to think I should have to support my diagnosis. I should have trusted what I believed more because often like a mother knows her children, a caregiver knows the person they are caring for.
Hugs janol
yes its hard to do the job of a care- giver''' i have been at it for over 20 yrs, learn to ask questions, dont let them walk away from you untill u feel they have helped you?????? my health has gone down hill, i may need help soon, have no family, ecept 3 sons all out of state''' not sure what to do but looking for anwers, god bless all c.g`s jacky33
Hugs Paula Spencer Scott
Prayers Rosy Day
Paula-a wonderful article. I have learned so much patience through dealing with my dad over the past 3 years, I was already fairly patient, but dealing with Alz. requires a whole new level. I thank God that he has helped me with that. I too need to cherish the moment-I know that. Sometimes I can-and at other times it is beyond me. I am concerned about my mom. SHe needs more help with Dad, but is unwilling to do that yet. I am also dealing with concerns about a sister with cancer and a family business. Lots on the plate. I appreciate this outlet and pray for all of you dealing with hard situations.
Hugs Paula Spencer Scott
Prayers Rosy Day
Every one has had so many good things to share. You have all been very helpful. My mom has been gone for some time now but if I could have her with me, I would gladly do it all over again. Thank you for being here. It is always a comfort to read all the good ways every one has done. I can see I did not do too bad in taking care of her.That is a blessing to me,because some times I wish I had known about so many more things and I wondered if I was doing all I could, but from what I have read here I guess I did ok. God bless all of you. Dove
Hugs Paula Spencer Scott, Rosy Day
VERY helpful ! I just realized lately that the Doctors do NOT know everything ! Jan
My mother had dementia for the last 10 years of her life (she died last year) and my father now has dementia. I love what was said above about "being in the moment." Although I didn't and still don't always follow that advice; it is so "right on."Sometimes you have to just take one moment . Instead of worrying about what is going to happen in the future, or being sad about what is happening with them now, just enjoy EVERY MOMENT you have with them while they are still here with you.
Hugs Paula Spencer Scott
I have learned not to travel even to visit the kids in other stats we did that in August and we had a nice time but when we got home my husband did not know where he was or how he got there It took a lot of explaining the same thing plain flight travel to and from the airport But it was scare so i have decided if my son and daughte want to see him /us it will be op to them we are staying home He did get back to where he was before but I am not taking any chanses mybe this will help some one els love to yu all
Hugs Paula Spencer Scott, Rosy Day
thank you for this article I can not learn enough it all helps thank you
This is a good article. It is about a year and a half since I became the primary care giver for my Mom. At first it was a duty; you know, you have to get this done and that done. So you try to make it happen in the time you have to do it in (school, work, and care giving). I took a break on this past weeekend to get myself centered - I had aches that I didn't have before and my BP was all over the place; all going in the wrong direction. I have learned that my siblings are in denial. They still ask, why can't she remember to eat or take her meds in a tone that is starting to be very annoying. I have learned that until they are ready to accept what is going on I am IT. I have learned that regardless to what they are willing to do either in denial or fear my Mom still need love and compassion. I have made this my new focus; love and compassion then duty.
Hugs Paula Spencer Scott, Rosy Day
A great article. The most difficult lesson is to just live in the moment. I am trying to be more mindful of that. We realize that when my mother's routine is not disrupted, the days are much better. When her routine gets upset, that is when the anger and hostility begins. We are still learning so much. I appreciate all the helpful comments.
Hugs Paula Spencer Scott
Really wonderful article. You picture reminded me of my dad; he died last November at 99 of Parkinson's and had Parkinson's dementia. He lived with us his last 3 years and the pressure of caring for him and my husband who has AD was truly horrible...but we did it. I am still trying to learn what did I learn and what was the purpose of all this. Two things come to mind: 1) it gave me a chance to be a good daughter which was not possible until he moved in with us. and 2) I am closer to my husband and love him more than ever before, I take nothing for granted.
Hugs Paula Spencer Scott
Paula, such a great article and I will be saving this one to read again. I will be paying attention to the great tips you shared, and you are so right about moving past the pain of what's happening to them and try to live in the moment. That's a tough one that I'm still working on, but feel I'm making progress, sometimes only an inch at a time but I'll take it. My tip that I've learned in the 5 years of living with my Mother with Alzheimer's is to realize as early as possible that you cannot do this alone. Get professionals involved. I go to a monthly support group, to a counselor once a month, and recently hired a Geriatric Care Manager which has been a God-send. "It takes a village......"
Hugs Paula Spencer Scott
A helpful article. My wife has finally acknowledged that she has a problem and other people have been aware of it. The first symptoms I recognized in retrospect. Indeed, they may not have been the first symptoms because I was not sufficiently aware of even the possibility. Her recollection of dates, times and places had always been questionable. It was only with the onset of mental confusion that she became argumentative about the accuracy of her memories. There's a long, hard road ahead.
Hugs Paula Spencer Scott, ctconnie