How can caregivers cope with the tragic loss of a parent to Alzheimer's?

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Q: How do I cope with the sorrow of my mother’s prolonged illness, Alzheimer’s Disease?

A: I know exactly what you are talking about. When I was taking care of my elderly parents (both with early Alzheimer's which was not properly diagnosed for over a year), I cried nearly every day. A social worker encouraged me to get into an Alzheimer's support group, but I was so resistant and thought, "Why in the world would I want to go listen to other peoples' problems and sad stories? I have two right here!" And, with my mother up and awake all day, while my father is up and getting into everything all night, how am I supposed to slip away for that?

I think as caregivers we can get so isolated that even though intellectually we know we aren't the only ones going through it, emotionally it feels like we are. I found that reading caregiving statistics helped me feel less alone, especially the one about: "More than 50 million Americans are taking care of a family member or friend--and 20 million of them are Baby Boomers caring for an aging parent." Wow, now that puts the enormity of the situation in perspective real quick—my situation is not unique. Maybe I need to find some of these people!

It still took over a year into my caregiving journey before I finally went (kicking and screaming) to my first support group meeting. Within fifteen minutes, I could not believe what I had been missing. A safe new world opened up to me and I felt accepted and normal for the first time in a long time. I was finally free to speak my mind with people who really "got" what I was going through, and who listened to my frustrations and even offered creative solutions.

When I lamented that I just could not get my father to stay awake during the day so he'd sleep through the night, someone said, "Oh yes, that's sun-downing and it's actually very common. Enroll your parents in an Adult Day Health Care program and then they'll both be busy and tired at the same time. And, you'll get several hours of respite during the day!" Where do we sign up!

And it wasn't long before I found myself helping others solve their problems, which made me feel great. One gal said her mom was still independent, but couldn't see well enough to find the start button on the microwave. I said, "I went through the same thing with my dad. Put a big magnifying glass on top of the microwave, and put a little patch of Velcro on the start button so she can feel for it rather than trying to see it." They thought I was brilliant. Hey, I am not as dumb as I look.

Finally I was with people who didn't look at me like I was weak and that I just needed to toughen up. They listened, shared, laughed and cried with me, and gave me real hope that I could get through my darkest days with dignity and grace. They also gave me plenty of those warm hugs—which I so desperately needed.

I also found it helpful when I realized that every person who has ever lived, since the beginning of time, has had to go through the heartache of watching those who came before get sick and eventually pass on. It is a universal law, but even with all that has been written, when it happens to you—there are no words that describe the depth of the sorrow. No one should ever have to face that alone, so be sure to get into a support group right away—you'll be glad you did!

To find a support group in your area, call your local Area Agency on Aging, Department of Aging, Alzheimer's Association, local hospitals, senior centers, and Adult Day Care centers.

Jacqueline Marcell is a former television executive who was so compelled by caring for her elderly parents (both with early Alzheimer's not diagnosed for over a year) she wrote "Elder Rage." She is also an international speaker on elder care and host of the popular Internet radio program "Coping With Caregiving."

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6 Comments

Hi, here are 2 different approaches that worked for me with mom (85) and dad (86). Mom is at the stage where she wants anything that is not hers, i.e., clothes, perfume, jewelry, food, etc... She is pretty stealthy and I constantly find things either stashed in her room or see her wearing them. When she's caught red-handed, she insists the things belong to her and pitches a fit if you try to take them away, so much so that I have to turn away or leave the room so I don't break into uncontrollable giggles, she's just like a 2 year old saying "Mine!" She rarely does what she's asked to do and almost always does what she's not supposed to do. I solved the diaper problem by bringing them home and telling her they were for me and to please not take them for herself. Within 15 minutes, she had "snuck" into my room and taken them and has been wearing them ever since. She even helps pick out the ones she likes when we shop now. It's a win-win! She thinks she pulled one over on me and I'm not doing 4 loads of laundry a day anymore, lol. Dad's a lot sharper, so I appealed to his intellect, I took him to his Primary Care Physician, explained the situation and asked him to educate Dad on the very real danger of infections (UTI's, open sores, rashes, etc..), that occur frequently with incontinence. He also showed him some statistics on Senior Mortality Rates, deaths due to untreated or severe UTI's, which sadly are fairly common with incontinence. Once Dad realized the health risks, he reluctantly agreed. {You might also try asking your PCP to write a "prescription" for the diapers, sometimes seniors will listen to their doctor's advice even if they find it disagreeable.} The first month was tough, but there have been no problems with Dad since then. It might help if you bought small quantities of several different styles and brands and let your folks try them out. Believe it or not, there are many fit, comfort and quality differences in adult diapers. If you can find one that is comfortable for them and fits right, you'll have less resistance. Good luck and God Bless!
Dad Needs Help With Mom AND I Need Help TO Help Him Mom has Alzheimer"s And she is at the stage wear she is not makeing it to the bathroom in time not all the time but enough that it is getting to dad they are both 81 years old and have been together for 60 years. anywayshe needs to start wearing depends or something like that but she says that she is not a baby and that we are just saying this and there is nothing wrong with her and that never happned Is there away to get her to do this I say just take away all her under pants and put something in place of them and tell her she has been wearing them for a while but dad said she would just get mad at him and this is true so please someone help us we dont know what to do or wear to go for help on this
When I was Primary Caregiver for my MIL, she didn't want to either.
Before I was PC to MIL, my DPOA SIL convinced her somehow to wear them. It was being put in the assisted living facility (ALF) and she had to have them. When she was living here, she expressed to me that she didn't want to wear DEPENDS any longer. She wanted her regular underwear. I told her that she was having too many accidents and couldn't get to the br fast enough. I then said, "You don't want to have that all over, do you?" Her answer was, "No." ...and she reluctantly kept wearing them. As her Alzheimer's Disease (AD) progressed, she would have heavier bouts of pee. Sometimes, all over the sheets, etc. We finally had DEPENDS Super Plus during the daytime and for night, we would have her wear TRANQUILITY (they're pull-up disposable underwear that holds 1 qt. of liquid). Some of the things that she didn't want to do (and really had no choice), we had to call the dr. about the situation and ask her advice. Before we called the dr., I would call the elderly day care center that she attended and ask the nurse or director. ...but I was careful not to mention anything about the situation in question in front of my MIL. She still has good hearing and despite what others think, I think she remembers...maybe not right away, but I'm sure it gets put in the back of her head. ...but for things, as I started to say, that she REFUSED to do--sometimes, I would have to resort to the doctor. Usually got the girl who helped her. ...but since they see other elderly patients, I figured they'd have an idea. Good luck! ((((((HUGS))))))!