Alzheimer's Disease: Losing More Than Memories
From Dementia to Alzheimer's
Just 10 months. That's all it took.
My grandmother changed from a somewhat forgetful elderly lady (she's 92) who could get around with a walker and enjoyed activities like watching my daughter's gymnastics meets, to a wheelchair-bound and completely frightened old woman who has to be locked in her room every night at the assisted living facility, for her own safety.
She was a fiercely independent person. Up until age 88, she would still walk the steep stairs in her home to do the laundry and even attempted to keep up her 1/2 acre vegetable garden. Sure, she was a bit forgetful, but she was rarely at a loss for words.
When grandpa died, she had to move to a nursing home, which she detested. My mom had her come and stay at their house every month for a week or more. But my mom is not a nurse, and her home was not properly outfitted for these visits. One night, grandma fell in the bathroom. No one found her until morning; she had been down for 4 hours or more by then. That was 10 months ago.
Grandma slipped away from us quickly following the accident. Today, she doesn't even recognize her own grown children. Hallucinations frighten her at night and she has become unruly when its time to transport her to doctor and dentist appointments. Finally, we received the diagnosis that we all knew would come - though we tried to explain her symptoms away as merely aging - Alzheimer's Disease.
Who Suffers from Alzheimer's Disease?
Alzheimer's Disease can strike people from middle age to the elderly. In fact, if you are over 50, experts advise to be aware of the signs of Alzheimer's.
More than 380,000 (that's well over a quarter million) people are diagnosed with the progressive disease every year. Over 5.3 million Americans suffer from Alzheimer's. But they are not the only ones affected.
Spouses, children, neighbors, parishioners, experience the "Long Goodbye," as the disease runs its course. One reporter on CBS Sunday Morning, whose wife was diagnosed in her 50s, describes it as attending the same funeral, over and over again, without finality.
Caring for a person with Alzheimer's is stressful and very expensive. My mother drives 1 1/2 hours each way to visit my grandmother twice a week. Most days, grandma just sleeps through the visit, and she never remembers that my mom has been there, let alone the fact that she's her own daughter. When they moved grandma from her "regular" apartment to the Alzheimer's ward, the monthly bill quadrupled.
Sadly, it can take years before the brain can no longer function to direct even basic functions like breathing. In some cases, the patient may linger for 8-10 years, not knowing who they are, not remembering their deepest memories, and not being able to moderate their emotional outbursts. Eventually, some patients can no longer feed themselves. Loved ones nearly always have to seek professional assistance for caregiving.
A Daughter Talks About Her Mother's Disease
What are the Effects of Alzheimer's Disease?
Alzheimer's Disease gradually affects discrete areas of the brain that are responsible for certain functions. Plaques and tangles on the brain kill off cells slowly over time, compromising a wide range of functions healthy people take for granted.
You may notice the following signs of Alzheimer's in your loved one:
- Forgetfulness
- Agitation, anger or a general change in mood/disposition
- Inability to recall recent events
- Difficulty planning for the day or solving simple problems
- Inability to remember names of loved ones
- Confusion regarding time or date
- Difficulty in "finding words" when speaking
Consult a medical professional if you notice these symptoms and they are impacting daily life.
With grandma, we believed that she had dementia and was simply aging, which meant forgetting things. The diagnosis of Alzhemier's Disease came following her significant confusion as to the date, the time, her changes in mood and - perhaps the most scary to witness - her hallucinations.
What Can You Do if Your Loved One has Alzheimer's Disease?
Unfortunately, Alzheimer's is not curable at this time. People have reported varying success in slowing its progression using several drugs, but researchers and scientists are hoping to find effective treatments to either prevent or treat the disease. There are many organizations (listed below in this article) to which you can donate to help advance the medical research.
So, what can you do if your loved one has Alzheimer's Disease? I can speak from our own experiences:
- Be patient - whether they have confusion over the date or are asking the same questions repeatedly, keep in mind that its not their fault
- Be consistent - routines can help. Rouse them in the morning at the same time each day and keep mealtimes predictable
- Be loving - help them comb their hair or brush their teeth. Offer your assistance. Visit them frequently and if you live far away, send cards regularly. We find that a 45 minute visit is about the length of time that grandma can endure; we read cards to her and chat about the season, we walk down the hall and comment on the pictures
- Introduce yourself - its not a quiz show or a test! Don't ask them if they know who you are. My mom always walks in and cheerfully announces, "Hi Mom, its me, Jeanyne!"
- Talk about special memories - on a good day, grandma loves looking at photo albums as we identify the people in the photographs for her
Alzheimer's Disease Can Strike Younger Adults too
Find a Support Group for Alzheimer's Disease
The long goodbye of Alzheimer's Disease is exhausting. Your loved one is no longer the person you married or grew up with. You feel helpless and often you feel angry. Why bother visiting, if they don't even know who you are?
Time drags on and the progression of the disease can be upsetting as cognitive and physical functions decline and more assistance is needed for basic activities like getting dressed and eating.
Trust me here - you still need to visit. Your strength is comfort to the person suffering from the disease. I see the joy on my grandmother's face when I bring my children in to see her. She's just happy to have visitors to sit with her for a bit, even if she doesn't remember our names or even that we are related to her.
There are support groups to help with the overwhelming emotions associated with helping a loved one with Alzheimer's. Ask your medical professional for referrals, or consider one of the organizations listed below in this article.
Maria Shriver Discusses the Impact of Alzheimer's on Her Family
Donate to Help Find a Cure for Alzheimer's Disease
© 2011 Stephanie Marshall
Comments
I bookmarked this to come back to, as I am still learning to live in the land of Is with my, adorable Mom, who has Alzhiemer's. They are all different in the progression of this disease from what I read. Never the less it is a sad "long good-bye". Thank you for your recommendations that I plan to follow-up on.
This hub is very emotional to me. Just a few days ago, a close and very dear aunt, passed away from this terrible and sad disease. It has been so heartbreaking to watch someone you love go through this. Thank you Steph for sharing this moving hub, and sharing your knowledge and experiences.
What a beautiful hub, full of good information as well as a lovely tribute to this wonderful woman. I had an uncle who had Alzheimer's for eleven years. My mother was diagnosed, but passed away in her sleep about a year after her diagnosis. I'm actually grateful that she was spared years of this disease. I believe families can contribute wonderfully to a patient's quality of life, as you've shown. Thank you so much for a loving but frank look at one of the diseases that are striking so many families. God bless you.
While browsing through the topics today, I saw this hub. It caught my interest because my family and I are experiencing this disease with our mom. It is a heartbreaking thing to watch, but is good to know what to expect and how to handle things.
Thank you for addressing such a personal and important topic. My grandmother began her battle with Alzheimer's as soon as grandfather died and she faced many nights alone. She spent nearly 20 years with the disease. Her two daughters took turns 6 months out of the year. So, I came to know her then.
Strangely, she improved at home. The time she spent at my cousins' she would sit in a rocking chair in front of the TV all day. They cared for her well, but no one incorporated her in the family. We lived and worked in a family business so we assigned worked to her that was neither boring nor over her head. She learned prayers in English (The Divine Mercy Chaplet) that she never prayed before.
She was fixated on being 12 years old and this did not change, but she did not loose familiarity with us. Names escaped her, but she somehow knew she had "grandma authority". We shared a room and she would console ME should I be having a blue mood. I miss her terribly. The person she became was not the same she was, but I'm glad I got to meet them both. We tried medicines to see if she would improve, but they made her sleepy or aggressive so we discontinued them.
The week before she died we witnessed her sit on her bed and stare happily in front of her. She stretched her arms up as if someone was asking her to dance and looked at us transfixed. Her body became soft and her face was young! Soon after she went into her last days.
God bless you, your grandmother and family. May this article bring much relief and hope to many in the same conditions.
Alzheimer's is such a sad, sad disease - thank you for sharing your experiences and knowledge.
I like that short film "My Name is Lisa". It was so powerful. For those who have skipped that video, go back and play it.
I'm trying to find tips on how to stave off Alzheimer's (and will write about these tips on hubpages). Because I know it is easier to try to delay or prevent Alzheimers rather than cure it after symptom appear.
I also had participated in the Alzheimer's Association's "Memory Walk" in the past.
Sorry this happened to your grandmother. May God help her and all of you. Thanks for the beautiful and touching hub which is also useful.
Thanks Steph.
Blessings to your family, as well.
Wow. My mom is in a nursing home with vascular dementia. They fought hard to say that she had Alzheimers but it proved not to be true. Unfortunately, the end result is pretty much the same. She, too, sleeps most of the time. Has times of anger. Total personality change. We do have to reintroduce ourselves. I am fortunate that, though much older, my looks have not dramatically changed. So, whether she sees the "today me" or is remembering years ago, much of the time she remembers me. Others in the family don't have that blessing. My dad visits her DAILY and has for the two years since she had to leave home. He could not possibly care for her. Bottomline, our hearts should go out to everyone with a loved one....and the loved one..with Alzheimers. Thank God for kind, loving trained people who care for them.
Seeing them at the same time losing it was awful. Just the blank look in their eyes hurt the most. I feel for anyone who goes through this. Hope all is well Steph. Take care.
Such a sad, sad disease. It is so hard to watch someone you love go through this. My grandparents both had this almost at the same time. Great hub. Very useful. Best wishes Steph.
Very touching story and Lisa's video. This disease is very difficult to face for family becouse ruin the relations and can generates feel of anger, guilt, impotency. Thanks for sharing.
Great article stephhicks68!Extremely touching and highly informative!
I read somewhere that people who keep their brain active through reading and research even in their old age are less likely victims of Alzheimers. Is it true? Any information on this? Also read, don't remember the source that red wine prevents several diseases including Alzheimers? Let me know.
Great info ..Thanks for sharing stephhicjk68
I am so glad I found your hub, I had my mums diagnosis two days ago. I knew something was wrong, but the cold hard facts are hard to take in. I am really struggling to come to terms with it, and you never think it will happen to you until it does. Its life changing for a whole family and i am scared of being the main carer and the future. I will we back to read your advice i am sure. Its just the saddest thing...
Speechless. Thank you for writing this article.
K9
Very moving, very moving!
Thank you!
Stephanie, I am so sorry to hear about your grandma. I think this is a great hub, and I want you to know you are not alone. My dad is only 66, and currently dealing with late stage alzheimers. It is heartbreaking, and I hear you when you say that just a year prior things were going well. My dad is so healthy in every other way, and has been for a lot of his life. The good news, is that he has a good disposition and somehow remembers his daughters and brother and sister. He is peaceful and happy too, which is not always the case. We are losing him though to this and it may not be long.
I loved your pictures, and your tips for what to look for, as well as what you can do if you have a loved one with Alzheimers. I so hope they find things that can help more in the future. I really am glad you shared this, it will help someone.
I am so glad I found this post! Your words and heart-felt insight into this subject has opened my eyes to what some of the things my father had to endure as he watched his own father walk down the "road" of this condition. I am sad to say I buried myself into my own life and family at the time my grandfather was battling this fight. Now, if it should happen to my own mom or dad, I will have some base of information to began to build upon. -Paul
This was a beautiful and loving article full of information and compassion. I am a CAREGiver for seniors and see many of these symptoms. This is a disease that brings so much pain and loss.
Thank you for writing this.
I lost both my grandmother and mother to Alzheimer's. I cared for my mother as long as I could, but as you said it is extremely difficult for an untrained caregiver.My mother was a flight risk, so it was a 24/7 job. She even managed to sneak away under supervised care. It is a tragic disease that should be researched much more, considering the country is now faced with millions of aging baby boomers. Great Hub, very useful information for everyone. Thank you for sharing.
This has been a wonderful article with appropriate multimedia. Thx!
My mother died from this disease and sometimes I also worry that I am getting it myself. This was well written and well researched and I thank you for this!
Well done stephicks68. This is a wonderfully informative article.
As you point out- Patience, understanding, and charity are all key ingredients in our relationships with the afflicted.
I will be back to read more of your work.
write on! ... Peace and well wishes. I voted 'UP'
greg
This is very useful information. Part of what is so frightening about the prospect of a loved one having Alzheimers is the lack of good treatment. I've had a couple of Aunts that were diagnosed and later died with this. Now I'm the person primarily responsible for my 83 year old mother's health care. She still lives on her own, but of course has a number of health issues. Unfortunately, it's her word finding difficulty and occasional forgetfulness that distresses me the most.
Gosh Steph - That was so wonderfully shown in terms of what happens. Alzheimer's is the saddest of all things but then again any dementia is the worst. I have a friend who is 70 and showing all the signs - it is like seeing someone you love disappear.
Sad way to lose someone definitely but I always like to think that I will always carry a part of the people I loved and are no longer "with me" in my heart - the same goes for folks with dementia.
They may not be 'here' anymore but they are 'here' in my heart. What a beautiful tribute to someone you love dearly! (It shows!!)
My grandfather was diagnosed and we had to move him from California to Arizona to be cared for by my parents. They could only help him so long before he was moved into a home. It was amazing how much the disease changed him. Before he was a very loving and helpful man, caring for others constantly, and afterwards he was very violent. It may have been from the fear of not knowing who was taking care of him or who was visiting him, I don't know, but the change was drastic.
Also, I am currently ministering to a church where there are several cases of spouses with Alzheimers. They are all in their seventies and each one has been moved to a home for everyone's safety. It is a sad way to lose someone, I am very sorry for your loss. May you remember the good times with your grandma over all the others.
Thank you for sharing the impacts of this disease from your personal experience and for providing the stellar information about the disease and resources for learning more.
One thing that's impossible to know is how the Alzheimer's patient experiences his own disease. One gentleman I know, who no longer recognizes me, delights in meeting me anew every time I see him and has a certain awareness about this...he will say, "I probably knew you, but I don't know you now, so I'm pleased to meet you again." There's an eerie awareness that he seems to have.
As there is no cure, there is also limited understanding about how the Alzheimer's patient experiences his own reality. And therein lies so much of the pain for those who love him.
The pictures of your children with with your grandmother are beyond priceless.
My father was diagnosed in 2006, since then it has been a long and hard road that we have traveled. I am one among an infinite number of people who are part of the ever growing population of "family caregivers" in the world, and the projections are bleak. Alzheimer's related dementia and full blown Alzheimer's Disease are rampant in our country and throughout much of the world, and as you've stated, there is no cure at this time. Thank you for a compassionate, informative, and well written hub. I look forward to reading more hubs by you.
I found this article very informative and moving.
It looks like Grandma was surrounded by love and I hope on some level she was comforted by that. Great article,
I am so sorry to hear about your grandmother. But life must go on. Thanks for writing this and share useful information about alzheimers. I know you can write this based our experience in taking care your grandma. You share useful tips, very informative. I learn much from you, Steph. I believe your Grandma give her smile in heaven. Don't forget to send her pray. God bless you.
Love and peace, Prasetio
It is bad for all concerned. I understand that math abilities are the worst affected. my brother was an engineer and was hard hit by getting the disease at a tiem whne it was not well known as now.His first knowledge of it was when he got lost on his way home(in Los Angeles) from work.
This is such a good thing to share, so we all are more aware and perhaps there will come a day when we can do more for our loved one's with Dlzheimer's Disease. I worked with the elderly for a few years at a facility, and now care for elderly at home. I have lost others this way as well, I do understand just how much strength it takes every single day to care for these loved ones. Not to mention all the devotion too. I hope we will all keep fighting the good fight here together, until perhaps it won't need to be a fight any longer. Thanks again, A.B.
Steph,
I love your words and your Hub, even though they bring back many painful memories. I can hardly actually believe I'm going to share this information. As a child, I was closer to no one more than my maternal grandmother. Unfortunately, I went, "Errant," for a number of years and saw little of her, (alcohol - not drugs!) even when she became ill. I will hate myself for that forever because although I did spend a lot of time with her during her last weeks in 1996, I will never know whether she knew I was there or not. Other than one fact and I swear this is true: the last word she was known to speak, several weeks before her death, was, "Gordon," when I arrived and held her hand. I spent three days constantly with her leading up to her death and I had left, exhausted and desperate for sleep, one hour before I got a phone call...
I am now back in Scotland, in the old home town, and actually see the same happening to my own mother. Early stages but the same. It is a horrible thing to watch happen to anyone, particularly to someone that you care so much about.
Thank you for your courage in sharing your experiences and I wish you and your family the very best,
Gordon
Thank you Steph for not only sharing this important information about a disease that so many people are facing today, but for the thoughtful and personal way that you have done so. You are bravely facing this challenge and are teaching your children the value of compassion and understanding as well. Keep up the good fight!
As always a wonderful, informative hub, Steph-- and especially moving because of your willingness to share your personal story. I too will say a little prayer for your grandmother and hope that her downward slope is smooth and peaceful.
Hey Steph, I'm so sorry to hear that your family is going through this. My grandfather was diagnosed when I was around 15 and it was a long down hill road to the end (around 6 years later).
Your hub is so well done. Sharing so much of yourself will help others. Sending hugs across the country to you. :)
This is so sad and scary. I do hope they find a cure, or better yet, a prevention.
I never had to deal with this on a daily basis, although, when my kids were young, I did encounter the early stages of it in two great-aunts when we took the girls to meet their New England relatives back in 1981.
It was very sad, because both aunties had been 'sharp as tacks' all their lives. To see one aunt mis-identify a bridge she'd known since young-adulthood was startling, to say the least.
The other aunt, I nearly cried, as she inquired of me what grade I was in, in school. Here I was, with children of my own, ages 10 and 12, with me driving the rental car I'd obtained, and she asks ME about my grade level in school!! I was shocked and dismayed.
This was the auntie who had written me such clever letters during my childhood, telling the 'news' of her and uncle's daily activities as though through the eyes of their little dog.
At that time, Alzheimer's had barely just been given a name, and there was not much information about it.
This is a great hub, and I appreciate your courage in sharing the story. Voted up and useful.
Thanks for sharing your story, your love for your Grandma shines through every informative, and touching word.
Thanks so much for sharing your very personal story. It brings the difficulties and sadness of this disease more itno focus, when you tell it like you do.
Steph, this is my favourite article on the topic of Alzheimers. So much information on such a personal level. The videos you chose were so fitting to how you're presenting this. I'm so sorry that you had to experience this, but on the other hand there is something to come away with, isn't there, for everyone involved. My grandmother suffered from dimentia, although I really wonder if it wasn't Alzheimers. My mother took care of her herself, refusing to put her in a home after having to take her from her native country of Greece. I don't know how she did it. Thanks so much for sharing this experience in the way that you do here.
I'm afraid research has dropped the ball on this condition...they don't have an reliable early detection method,and few available treatments,none very effective,but are taking over this phenomena at full stride now,tell your grandma hello for me,stephhicks.;)
I read every word. I am deeply touched by your story. I am glad that you still take all the trouble and time to visit her.
Perhaps you can write another hub on how to prevent or slow down the rate of getting Alzheimer's diseases.
Alzheimer's is a tragic disease. While I have not yet had to deal with it on a personal level, I do know many who have. I am very sorry to hear abouth your grandmother. Let's all pray for great strides to be made in the prevention and cure of this awful disease.
Thanks for this informative hub, my mother-in-law was first diagnosed with Alzheimer's about 15 years ago and she died eight years later.
My husband's father developed Alzheimers in his sixties and died a few years later. While most of us think of this as a disease that effects the elderly, as in 70s to 90s it can happen earlier.
From all reports, the person suffering the disease is less affected than those providing support. I wish you well with your grandmother Steph. It must be a distressing time for you and your family and I thank you for having the courage to share what you are going through.
This is a very touching story. I've never had a close family member with the disease and I hope it stays that way. It is good to know that if it does happen there is support out there.
Having worked nursing homes and with the elderly for over 20 years, by far, the most upsetting part of this disease for families is when the person gets angry. Many loved ones do not understand the anger and find it hard to deal with.
I lost Dad to Alzheimer's in 1999. I was the target of his anger, and for that I am grateful because he was a powerful man and might have harmed my mother or sisters. It was painful because as father and only son, we had always been close.
He was diagnosed in 1994 and passed away 5 years later, but his personality began to change at least a decade earlier.
We were lucky. The painful last stages passed quickly for Dad and then he was gone. The last time he remembered who I was was in 1997.
I will say a little prayer for your grandmother Steph, and another one for you.
Will
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