Alzheimer's: Tips for Coping

Alzheimer's disease

I know all too well the heartbreak known as Alzheimer's disease. My gandmother had it, but at the time, I was too young to fully understand the condition. But when my mom developed the disease, I got to know and understand it on a daily basis. Below, I offer a summary of my experience with being a caregiver for a loved one with Alzheimer's. Your experience may be different, of course.

Mom had always been forgetful, so it's difficult to pinpoint exactly when the disease began. At first, we thought she had dementia. Mom's younger sister, to whom she was very close, died in 2001. She was Mom's best friend and neighbor. They did everthing together, so her death had a profound impact on my mother. Later that same year, my father committed suicide after a long illness. Needless to say, this took a huge toll on Mom, too, and since it followed on the heels of my aunt's death, Mom got a "double whammy" of grief and emotional pain, and her dementia got much worse. I cite that point as Mom's real decline. We eventually had to face the very real possibility that Mom didn't just have dementia - she had Alzheimer's disease.

We knew that she needed help. My husband and I moved in with Mom so that she could stay in her beloved home. This worked out well for two years, until Mother got worse. She started leaving the stove on, leaving the water running, and wandering off. Hubby and I both worked full time, so we couldn't watch Mom 24-7. Being a retired nurse, she realized what was happening to her, so she made the decision to move into a local assisted-living facility.

She had old friends at the home, so she thought she would be happy there. I was reluctant to see her leave her home of 40 years, but I knew it was the right decision, and the facility was beautiful. Mom had a bedroom, a small living room, a bathroom, and a small kitchen with a refrigerator. The grounds were manicured, and there were outdoor sitting areas, flower gardens, and a pond with ducks and fish to feed. She was excited about joining all the activities at the home and spending time with folks her age. We set Mom's room up per her instructions, with her own furniture.

The day I took Mom and left her at the home was very hard for me. I felt a wide range of conflicting emotions: guilt, relief, excitement, and loss. When I was leaving the facility, they took Mom to the on-site beauty salon to have her hair done. I left, and I cried all the way home.

I'd been home for maybe an hour when Mom called, saying, "You can come pick me up now. They've finished with my hair."

I was shocked, of course. When I explained to her that the facility was her home now, she went ballistic! She called me every name in the book - using words I didn't even know that she knew. I couldn't believe this was coming from my sweet, saintly mother! I called my uncle in tears, and he went to the home to talk to Mom.

I went to see Mother every day, and sometimes I went more than once a day. The home was next door to the school where I taught, so it was easy for me to stop and see Mom on my way home and during my planning block. My brother and his wife, along with my daughters and grandchildren, also visited regularly. During the visits, she was her sweet old self, but at night, the anger would return. This is par for the Alzheimer's course - it's called "sundowner's syndrome."

At night, Mom would call me over and over on the phone - sometimes as often as every five minutes. Seriously. "Please come get me," "Where am I?", "I want to go home." This was heart-wrenching, and I can't tell you how many times I almost jumped in the car to "break her out" and bring her back home. But then my brain would click in and tell me it was the disease talking. I knew she couldn't come home. She had already started a fire, flooded the house, and was seen on a busy street, just wandering around lost.

Mom gradually adjusted to living in the home. In fact, after a while, when we would bring her home for a family get-together, she would be nervous and would keep asking when she could go back. As her cognitive abilities declined, however, her imagination increased. During my visits, she told me some amazing stories. She would tell me about her new job, or about a recent trip she'd made, all with fascinating details. Of course, none of these things had really happened. But I learned not to argue with her. You can't use logic with a person incapable of being logical, so I usually just smiled and nodded.

Sometimes Mom would get on a tear about my dad. She'd ask about how he died. She had erased the suicide from her mind, and we saw no reason to revive that pain. We would just say that he had died of old age, and that seemed to satisfy her. I learned from experience to take the path of least resistance.

Mom stayed at the assisted-living home for two years. Then the day we had dreaded finally came. They told us they could no longer keep her because she was wandering away from the facility. We had to move her to an Alzheimer's unit. Fortunately, there was one down the street from me.

By this time, Mom never asked about going home. Sometimes she didn't recognize family members. When she saw me, her face would light up. She knew that I was someone she loved, but sometimes she couldn't remember my name. Sometimes she thought I was her mother or her sister. At other times, however, she was very clear in her thoughts. I would often see glimpses into the mother I knew before the illness. This is just one thing that makes Alzheimer's disease so difficult to deal with.

During Mom's last few months, she had little interaction with others. She mostly stayed to herself. This was tragic - Mom had always been an extrovert and loved people. But she seemed content. She was always happy to see family members, but she was no longer herself. My mother was gone, and some stranger was inhabiting her body. In a way, this was the most difficult period for me, but I think it was probably actually the easiest for Mom. She was no longer scared, no longer angry, and no longer worried. It's like she was in her own little world.

Mom died in 2008, in her room at the unit. She'd had bouts with congestive heart failure for several days, and had barely been out of bed. The day she died, she actually felt better. She got out of bed, sat in her chair, and stated that she was hungry. Her nurse hurried to the cafeteria to get Mom a tray, and when she returned, Mom was dead.

When I got word, I rushed to the facility. My brother and his wife were already there. I asked everyone to leave the room so that I could be alone with my mother. I sat there and held her hand, telling her how much I loved her and how much I would miss her.

Dealing with a loved one who has Alzheimer's is unimaginably difficult. It's a roller coaster ride of emotions, and it's almost as if you have to endure two deaths - one when you finally accept that the person you knew is gone, and the other, the physical demise of the body. You'll need a strong support system of friends and family members to help.

Don't be afraid to ask for help. There will be times when you simply cannot deal with the patient. Taking a day off will vastly improve your own well being. It's also important for you to "open up" to trusted friends and family, or perhaps to a minister or counselor.

Read everything you can find about Alzheimer's. Arm yourself with knowledge. Ask the doctor questions. You can find a wealth of help and information at the Alzheimer's Foundation.

After the death of the loved one, you'll have feelings of guilt. Could I have done more? Why was I short with her sometimes? Maybe I should have done this, or perhaps that.

All this is perfectly normal and is just part of the grieving process. Trust me - it will get better. Now when I think of Mom, I always remember how she was before the illness. I remember what a fun-loving, caring, intelligent individual my real mother was before she fell victim to Alzheimers.

Mom's last Thanksgiving.

From the Alzheimer's Foundation:

More from the Alzheimer's Foundation:

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Comments 31 comments

fastfreta profile image

fastfreta 7 years ago from Southern California

That was a heartwarming experience, thank you for sharing your story with us. I wish there were more I could say, however, I know that it's not necessary to always try to fix things, but it's my nature. Very good hub.


habee profile image

habee 7 years ago from Georgia Author

Thanks, FF. It was a rough time.


Ghost32 7 years ago

Right on. I've seen a number of "ancestors" go this way, one (among many) being my father. He was never actually diagnosed with Alzheimer's, but since demyelination in the brain can "branch" to any and/or all of a dozen degenerative diseases, that's not surprising. He was known to be suffering from Parkinson's and diabetes, but no one who knew him could fail to recognize the dementia.

He spent his last 2 years in a nursing home in Montana but with numerous family members and friends visiting--and monitoring the nursing home staff; no one was ever better covered in that facility in that respect. One heartbreaking sign of his mental condition was his occasional comment: "I don't know what I did wrong to get put here."

My wife has the beginnings of Alzheimer's. We both know it--have known since an MRI in 2003. But I've stated for many years (going back to my twenties, probably) that no wife of mine was ever going to a nursing home, nor was I. Quite frankly, anyone who ever thought they were going to put me in one would be taking their lives in their own hands. Not that I don't understand why Dad...and one grandmother...and my close friend Florence...and many others have had to go.

As for my wife, no, of course the time will come when I won't be able to care for Pam effectively without assistance. My health is just fine, thank you, but you can't run 25 miles to town for groceries and leave a late-stage Alzheimer's patient alone OR take her with you safely. Not and get the right groceries!

However, Pam and I've been planning ahead for all of our 13 years together. One of our prison pen pals will be released from prison about a year from now and will join us as we "grow" our "home hospice". All three of us are "as one" already, and none of us have the slightest glimmer of doubt that this is the right course.

Others may well be added later as needed--and, of course, as the "right" people are found and become friends. I'm convinced our society has it wrong these days. In the old days, most older folks could count on living out their time surrounded by family. What's a two-person home but a recipe for disaster, anyway? One dies, one grieves, nobody's functional. I'm reversing that.

On another side of what seems to be a multi-sided coin, the Alzheimer's may not be what gets Pam in the end, anyway. Her COPD is pretty severe and a great Grim Reaper candidate, and she's got plenty of other ailments to step in if that one doesn't do the trick.

One blessing in your hub that caught my eye is the mention of "sundowner's syndrome". Pam doesn't have that yet--maybe a hint of a hint here and there, but she's still 90% rational as long as I use my psych training and skills. Now that you've alerted me, though, I'm less likely to get caught off guard if/when the time comes.

How d'ya like that? A hub for a comment!


habee profile image

habee 7 years ago from Georgia Author

I'm so sorry about your wife, Ghost. I honestly think Alzheimer's is the worst thing that can befall a human. It's like Mom said - it's as if someone had robbed her of a lifetime of memories. So sad.

Hang in there, Ghost. I'll be thinking about you and your wife!


Vanne Way 6 years ago

Losing a parent or loved one, whether anticipated or not is a pain that stays with you for years. My mother had moved to Oregon as a spry, adventurous 72 year old. While she had ailments, she was very active in church and in giving. Coming home from church one night she tripped and injured her toe...and it all went to hell after that. After having her toe amputated we got mom in a rehab faciltiy where they were to help her. Instead they gave her a medication she was allergic to, left her comatose in her bed for 10 hours, then called to ask my brother did he think they should call an ambulance? 3 months later she was dead. Would she have recovered had she not received the lethal meds? I don't know. I do know that I miss her everyday of my life. She was not a conventional mother, but it was a hell of a ride. Holle your mom was my udder mudder and I miss her as well, she gave me so much, taught me things, just as mine influenced you. We have to remember the joy they brought us and the legacy they left us. Now we are the grandmothers, and the back bone of the family. It's tough, but we do it!


habee profile image

habee 6 years ago from Georgia Author

Your mom was a hoot! I did learn a lot from her. Our moms were very different, but I think we both benefited from that. Wonder if there's a special section in Heaven for presbyterians??


Vanne Way 6 years ago

I would say there is a special place for Presbytrians! After all, we are the ones who have to cook, organize, and plan evrything! I often sense my mother, hear my mothers words, and feel her joy when something special happens. Our mother's will always be with us. For someone who swore she would never turn in to her mother, I can't think of better person to emulate! God Bless our mamas!


habee profile image

habee 6 years ago from Georgia Author

Totally agree!!


mel22 profile image

mel22 6 years ago from ,

My grandmother just died with this condition. This is one of the worst diseases i've ever seen. It's sad to see them in that condition , especially when they're not even sure who you are anymore. So Sorry to hear about your mother too! Take care.


habee profile image

habee 6 years ago from Georgia Author

Sorry about your grandmother. I agree - it is a devastating disease. Thanks for reading!


ethel smith profile image

ethel smith 6 years ago from Kingston-Upon-Hull

It must have been a very difficult period in all of your lives. It may sound hard but I think that in many ways the person, as you knew them, dies when the Alzheimers takes a firm hold. I guess I mean the essence of that person.


DeBorrah K. Ogans profile image

DeBorrah K. Ogans 6 years ago

Habee, This will be helpful to many! It can be overwhelming seeing your Mom regress... This is a terrible heartwrenching disease! This is why I call this a slow goodbye. I can relate on many levels... You are right about those last months. It is like Mom does not live here anymore, her body is still here but she is somwhere else!

One thing that you can be thankful of is that you can have peace knowing that you tried to do all you could to make her comfortable. In the long run it gives you much more compassion for others going through... Of course you always miss them. But the good memories of having a strong loving Mom and the great times you shared remains forever!

Thank you for sharing, In His love, Hugs & Blessings! Take care!

Praying Brooklyn is getting stronger every day God Bless you!


habee profile image

habee 6 years ago from Georgia Author

You are exactly right, Ethel. That's why I feel like I lost Mom twice.


habee profile image

habee 6 years ago from Georgia Author

Thanks, Deb. Brooklynn is doing much better. I wish Mom could have lived to enjoy all these little ones!


DeBorrah K. Ogans profile image

DeBorrah K. Ogans 6 years ago

Habee, Several hours after my Mom passed my seventh grand daughter was born and her name is Zoe` which means life! I always say one went to heaven and one came from heaven!

I think because of our Mom's we can really enjoy all the little ones that much more...Blessings!


habee profile image

habee 6 years ago from Georgia Author

Oh, Deb, that's amazing!


Happyboomernurse profile image

Happyboomernurse 5 years ago from South Carolina

Your story was so heartfelt and showed the many stages that a person with Alzheimer's and their loved ones go through. Particulary wrenching was the desperate phone calls in the night due to sundowner's syndrome. It sounds like you and the rest of your family remained very devoted to her even after she went to the Alzheimer's unit. Thanks so much for sharing your story.


habee profile image

habee 5 years ago from Georgia Author

We did, Happy. She was such an amazing person!


Shaan.S profile image

Shaan.S 5 years ago from Doha

Your story is so heartfelt...hmm...


habee profile image

habee 5 years ago from Georgia Author

Thank you, Shaan.


Tiffinnie profile image

Tiffinnie 5 years ago

Although you completed this hub awhile ago—it hits home with me. My g-ma died of early onset Alzheimer a few years ago and during her last couple of years she was completely immobile. It was so unlike her because she was so full of life and extroverted. I am still trying to cope but this disease is so brutal and cruel. Now my g-father (her husband) has Alzheimer as well. Today, he is in the early stages and unlike my g-ma he knows what is happening to him. We cherish all of the good moments we have with him as much as we can.


habee profile image

habee 5 years ago from Georgia Author

Tiff, that's all you can do. Alzheimer's is such a tragedy!


ahostagesituation profile image

ahostagesituation 5 years ago

This is an awesome hub. I've found how lucid they can be, and then completely out of their head to be quite the rollercoaster. My grandmother would say a stretch of rational things, and then she told my mom, matter of factly, "Did Shannon tell you she was a stripper? She is you know." To which my mother said, "Nothing surprises me with that girl," knowing fully well that is not true.

Terrible disease, thanks for the hub, and I hope you're doing well, habee!


habee profile image

habee 5 years ago from Georgia Author

Thanks, hostage. Great to see you!


christiehemme profile image

christiehemme 5 years ago

I'm touched. I have tried to write a little about this disease on my hub http://hubpages.com/health/An-Analysis-of-The-Alzh... and also put a link of your hub on my hub as your hub is very much informative. My dad has dementia and I can feel the pain of memory loss though it is partial.


hafeezrm profile image

hafeezrm 5 years ago from Pakistan

Very touching hub running around a personal experience. Thanks for sharing.


Jackie Lynnley profile image

Jackie Lynnley 4 years ago from The Beautiful South

You know sometimes I wonder if my mom really had Alzheimer's as they claimed or was a victim of side effects not having her medicines right with no one knowing she was distraught after my Dad died and going straight down hill. I do wonder what the shocks of loved ones dead does to them too. I asked her one day how old she thought she was and she said 50 and I showed her her hand and she said,"Lordy, is that my hand?" It is so horrible whatever it is and now all we can do is pray we can escape it.


irma e,,louisville ,ky 4 years ago

thats was very sad story so sorry for your loss ,,my mom had falling and i had to put her in rehab also and i want to bring her home and live with her but dont know no one for home health for baths for that would be a fight for me and mom ,,should i leave her there in the nursing home where there is some one all the time very confused ,,


cmichele-slp 4 years ago

Thanks for this article. I especially related to the part where you said your mother had been at the stage where she kept saying she wanted to go home. My mother has dementia and is in a very nice long-term care facility. I visit almost every day and every time I go she cries about being there or asks if she can come home with me or asks what she has to do to get out of there. In my mind I know there is no way things would work out if she left, but it is heartbreaking to hear her. Thanks for sharing your story. I can relate.


Peter Geekie profile image

Peter Geekie 4 years ago from London

Dear Habee

Although I have spent many years researching the function of Alzheimer's and other prion protein diseases, I have never had to experience the desperation first hand. Your article was heartfelt and beautifully written and I thank you.

Kind regards Peter


Barbara 3 years ago

I am very grateful for all the people here who have shared their stories. Like all of you, I know I have lost someone, my Mother, who is alive and just trapped in the last stages of this disease. I am also trying to cope, but my attachment to and love for her are just with me every minute of every day and I will never get her back....I am going to look for a support group...and hope for help. My heart feels for all of us.

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