What I’ll Say to my Children if I’m Diagnosed With Alzheimer’s

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I was skimming some other dementia blogs lately and a reader had written in saying, that though she felt guilty about it, she wished her mother would die in her sleep and not have to continue living through the pain and indignity of dementia.  I’ve heard others say things like, “I’ve told my kids if I ever get Alzheimer’s just shoot me.”

I understand where these comments are coming from, but they make my heart heavy.  I feel like these attitudes devalue my Mom’s life right now. Even though they are not specifically referencing her, they are in effect saying that people like her are better off dead. It is hard to see Mom changing and confused and upset. But she still has sweet times of love and joy, too.  And God still has a purpose for her life.

He is growing our patience as we care for her.  He is developing our tenderness and mercy.  God is giving us opportunities to show love to a dear mom who loved us all so well when she was able and strong. He’s sending us smiles and laughter with Mom’s quirky ways and funny words.  He’s challenging us to love faithfully when she is angry and difficult.

People with dementia are still people.  And God still has a plan for their lives. Even when they are bedridden and can do nothing at all, maybe their very life keeps us clinging to God more. Maybe their very existence draws us closer to God as we seek Him and cry out to Him.

I fear having AD someday myself. (My mind already concerns me too often.)  But if that day comes I’m not going to tell my kids, even jokingly, to just shoot me.  What I would say to them is this…. Pray and trust God to guide you.  Get as much help as you can.  I don’t want you to sacrifice your life plans or family for my sake, but I want to always be part of your life.

If you need to find a nursing home for me, I understand.  Pray about it and seek wisely. And then visit me often. Even if I don’t seem to know you, believe in your heart that part of me does.  Hold my hand and talk to me.  Tell me all about your life.  Sing to me and read the Bible to me, please.  Brush my hair and tell me memories of your childhood.

If I’m still able to chew be sure to bring chocolate.  (You know your mom.) And hopefully I’ll have some adorable grandchildren to marvel over.

And don’t forget to take some time to just sit quietly next to me. Hold my wrinkled hand and let God whisper to your soul.  I’m so sorry you have to go through this painful journey with me, but God will give you strength and grow you through it all.  Hold fast unto Him. Sink deep into His love.

Everything will be better in heaven.  Meanwhile, when I can’t talk anymore; just know that I love you forever and that being a mom to you was an honor and the delight of my life.

That’s what I’d say to my children. Oh, and I might throw in a “Be nice to your brother” for old-time’s sake.

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1,240 comments

  1. Our family is dealing with this with my mother in law. We keep pushing for a diagnosis besides “demensia”. With perfect brain scans, is demensia a diagnosis when there is no explanation for the change in personality and balance? Do we keep pushing for tests and new doctors??

      1. And there are 2 new tests for living Alzheimer’s patients recently developed at Mayo Clinic. The main proof in the past has been finding plaques & tangles in autopsies.

      2. Yes, definitely!
        After a Comprehensive Neuropsychological Evaluation which suggested FTD, a Pet Scan gave us a definitive diagnosis for my husband of Frontotemporal Degeneration (FTD). Now things are making more sense and planning is more reality based.

    1. My sister’s neuro doctor told me that dementia is just a word some use for the early onset of Alzheimer’s. He said it is all Alzheimer’s. If your mother-in-law’s scans are not showing any definate indications of the disease it possibly can be something else. Get more opinions. Talk to various physicisns in related fields or not so related. Some diseases mimic others.

      1. There are many more types of dementia than Alzheimer’s. There is an early onset dementia. There is Lewy Body Dementia, there are atypical dementias like Pick’s Disease. There is vascular dementia, alcohol induced dementia and many many more. Not sure why a neurologist would tell someone differently.

      2. They are not the same. Alzheimer’s goes down by steps but they do not go back up mentally for a time. Dementia is like steps Down3 up two down two. They can bounce some. Bottom line we are saying the long good bye. Been through this with 3 loved ones. You can email me to talk. It helps talking to non family people

      3. An article in our newspaper stated that dementia is an umbrella over many things, including Alzheimer’s; so Alzheimer’s is a type of dementia. And Alzheimer’s disease can be seen on an MRI, showing changes in the brain areas.

      4. Molly B. You are exactly correct. My MIL is going through the same thing and her Dr.’s told us dementia
        Is used simulataneously and interchangably with Alzheimers. It always progresses but there are medicines
        to help with memory and a slight slowing of its progress. After all the family noticed gradual and worsening signs, we talked her in to finally seeing a Neuro doc and they ran test to test her memory, cognitive skills and other such tests. It tells them how far along she is in her disease progress. And Alzheimers IS heriditary and can run in the family genetics just as any other disease. She is doing better now that she has adjusted to her meds, and we just take each day one at a time. Pray for all those with dementia/Alzheimers and their families that must deal with it.

      5. Molly, it’s the opposite. He must have told you that people refer to dementia as Alzheimer’s. Alzheimer’s desease results in dementia being a form of it as there are many forms.

      6. Some of the other commenters are correct. Alzheimer’s is just one for of Dementia. There are many different kinds—like there are many different kinds and treatments for cancer. My maternal grandmother had Alzheimer’s and my mother, her daughter, had early onset Dementia. Although they had some similarities, for the most part, their symptoms were vastly different. Unfortunately there was nothing we could do for my mom other than to take care of her and watch her disappear over 10+ years. I pray someday doctors find treatment and even a cure. My sister and I are terrified.

      7. My mother had Vascular Dementia from multiple strokes. It can also be caused by a car wreck or any other kind of head injury at any age. My mom was 45 when it happened to her. It wasn’t Alzheimer’s at all. I would think you should maybe find a new neurologist. To those saying it just keeps getting worse like Alzheimer’s that is also not always true. Vascular dementia is caused by injury in the brain. Unless it continues to be injured by say more strokes or head injuries in some other way it isn’t just going to keep progressing.

      8. I’m sorry I said vascular dementia because I was looking at a comment that mentioned that. She actually had multiple infarct dementia.

      9. It’s actually not “all Alzheimer’s”. There are many types of Dementia and Alzheimer’s is one of them.

      1. So was my mother’s. She had heart disease and lost only her short term memory. For five months we heard dementia as the diagnosis, Then, she had a heart attack. An angiogram revealed that all of her arteries had clogged except one, which was a graft from bypass surgery several years before. About two hours before she died, she was put on 3 liters of oxygen, her entire memory returned and she began asking questions about why she was “in that nice place”, remembered her roommate’s name, etc. She would have passed on at the same time anyway, but would not have gone through the memory loss and been uprooted from her home had she been correctly diagnosed as not getting enough oxygen!!

    2. I took my husband to 5 neurologists before getting a definitive diagnosis. He was on a lot of meds he didn’t need to be on. The last neurologist sent us to a neuropsychologist who did brain mapping. He could tell us what caused his problem, what could be done about it (nothing sorry to say) and future expectations. I feel confident that we now have the right info. It all fits.

    3. A diagnosis may help you get the proper meds/treatment for her. On the other hand, it doesn’t help as much as you think since each patient is so different and even the same patient can be different day to day or even hour to hour. So the diagnosis is not nearly as important as with other diseases.

    4. Have they checked her for a urinary tract infection? In older adults it can mimic dementia symptoms until treated.

      1. Yes and sad to say people do not know this. My dad is in the ICU right now…very long story…But he had a bad UTI and has really seemed like he has dementia but does not. Now my mom does have Alzheimer’s. She has been diagnosed for about 17 years now. The other day she was reading a sigh “End Road Work” and then said I don’t know why that is there. She had already forgotten we had just come out of road work/ I asked her if she knew what those words meant she said yes…two days later we were driving by a lake and she said oh there is a lampre over there I said do you mean lake and she said yes and I asked her if she could spell lake and she did. Blows my mind.

      2. Right! Very important! And since the patient can have communication problems, doctors may not suspect urinary infection! It can make a huge difference especially if the patient is given psychotropic meds and NOT taken off of them due to misdiagnosis.

      3. That’s exactly what happened to my mother I thought she was getting Alzheimer’s and it was a urinary tract infection. It kept coming back finally they gave her a low-dose medication to keep it away. It made all the difference in her mind

    5. Yes. I certainly would. My mother n law was diagnosed over 10 years ago. At Christmas she was good, one week later she had all the signs of Parkinson’s. Balance, fainting, seizure like periods. We saw her neuro he said she has Lewy body and he explained it like having 2 types at the same time. Lewy is rapidly declining every day. My husband is staying with her and I visit when I can. Alot of neurologist will not diagnosis lewy body. I will be praying for you and your family.

      1. My cousin was sadly misdiagnosed with Parkinson’s and the Meds prescribed for Parkinson’s can be deadly if they actually have Lewy Body Dementia. Unfortunately Lewy Body Dementia can only be diagnosed positively with autopsy post mortim. It’s a horrific disease! It’s what Robin Williams died from.

    6. We went through this same thing with my mom….doctors kept saying it was normal with aging. Then one day my mom got lost while driving to her doctor appointment. We found her walking around the hospital near her doctor office after 3 hours. My brother had called the police and when we found her and took her home, we called the police to let them know she was safe. The police came out to check her out and they told us that day she could never drive again or be left alone again. They also suggested we get an appt with a Geriatric doctor. We took her to the Geriatric doctor and he diagnosed her with late stage Alzheimer’s. While we were shocked, he also gave us tools and reassurance to help care for her til her death. Please see a geriatric specialist if you haven’t already. Just know many of us feel for you and your family and I hope you find some answers. General physicians are not equipped or trained to diagnose Alzheimer’s.

    7. Sometimes there is no other diagnosis. My mother -in-law has the same diagnosis. You can put them through all the testing & doctors visits but ultimately it won’t make much difference in the long run in 99% of cases. The constant travel can cause an increase in confusion. In our case we opted to just treat as best we could & symptomatically. Good luck. Prayers are with you.

    8. We are dealing with the same thing. They’re searching at Mayo Clinic for answers. They are tho king it is Possibly a Parkinson’s related issue. The path seems hard but God is the hard path expert! We are so glad we can trust Him to lead us where we need to go.

    9. I have just read recently that diet, diet, diet is masking some very real nutritional issues that parade as mild cognitive impairment (MCI) and/or early stage Alzheimer’s. Not saying that is the case here but something to consider… Allopathic medicine may not be too keen on pinpointing diet or nutrition as the culprit. It absolutely may NOT be the problem but with perfect brain scans, I’d want to go deeper and not settle for “idiopathic” causes.

    10. I would say push for more test don’t know what part of the country you live in but I would have her tested for lyme .

    11. Get an MRI for her. They are much more conclusive. I have dementia! There are medications and you can be diagnosed through a MRI scan! I was! I take one pill a day for dementia and one pill for high blood pressure, which is the main cause of dementia ( or it can be caused by head trauma also (from years ago)!

      1. Over a year ago, my mom was diagnosed with vascular dementia. She became wheelchair bound and could hardly feed herself. After getting her blood pressure and urinary tract infections under control, she has made a comeback. She is walking again and having “normal” conversations again. We have her back and are immensely grateful for each good day. I know she will likely decline again, and does have problems with any new UTIs.

    12. This was the way it was explained to me :
      Dementia is the large tree. Alzheimers is a branch. There are many types of dementia. Unfortunately, some types of dementia cannot be diagnosed till death. You just have to look at symptoms to guess which type of dementia your loved one has. In the end, it doesn’t matter. Just love them and have their needs met. Talk about things that happened long ago. They might remember.
      God Bless all caretakers. There is a lesson to be learned. Patience is one of those.

      1. Yes patience is the key. Love them and have patience. Make loving memories to the end.

    13. Medication sometimes can cause dementia-like symptoms. So can kidney issues. Check into that as well. My father-in-law was diagnosed with dementia but it turned out to kidney problems. He is 87. Thank goodness for the second opinion and for doing research on my own.

      1. I have heard this happening several times, Makes me wonder how many people are being misdiagnosed.

    14. I started Chemo in July 2017. And my brain is fuzzy and I forget alot things. I had a MRI AND scan they found a small stroke. They never explain anything . I have had nose bleeds almost everyday and the head aches are unreal. I finished Chemo Oct 2017. Still doing Herceptin infusion. I’m so tired always sleeping. I’m CANCER FREE, I get it all to Jesus. But my mind and headaches, nose bleeds, and forgetting lots of things, has really worried me.

    15. Hello Terry, Please have them test your moms urine for a UTI (Urinary tract infection). If her brain scans are normal her problem could be as simple as a UTI! It’s definitely worth having them do a simple urine culture. I don’t know how old your mom is and if she has problems holding her urine or has to wear adult diapers now but when a senior has a UTI it can affect them much more severely. It affects their brain unbelievably! It can cause total confusion, disorientation, dementia like symptoms and often can be misdiagnosed as Dementia or early onset Alzheimer’s! It is important that if she is diagnosed with a UTI that the doctor have the bacteria infection (identified) or the medical term is (keyed) so they positively know what antibiotic to put her on to kill the Bacteria Infection completely! If she is put on the wrong antibiotic the infection can hide and continue causing total confusion,(they may not even know what year it is,or the year they were born) the confusion can cause them to be someone you don’t even recognize. My mom has always been a sweet, loving, caring, church going, compassionate mother that loved helping other! I had no idea where that woman was! She was so confused irritable, and would get a little hostile with me when I would remind her where she was, what day of the week it was etc. It can cause depression, irritability, lack of appetite, & depression she suddenly didn’t want to even get out of bed or take a shower. I have been living a similar nightmare with my own mother and UTI’s & misdiagnosis and she was prescribed wrong antibiotics. If your moms brain scan is clear, I would absolutely ask the doctor to order a simple urine culture to rule out any UTI’s! Also, make sure they have it keyed. It’s worth a shot! Finally after being diagnosed and typed with the correct antibiotic after only 2 doses of the antibiotic my mom was like a new woman and started feeling clear again and the confusion & irrational aggressive behavior went away! I hope this info helps and hopefully be the answer or diagnosis you have been looking for. Please feel free to contact me if you have any others questions. I would be more than happy to help anyway that I can! My email address is: arhines216@gmail.com
      Sincerely,
      Amy

      1. My Mom was diagnosed with Lewy Body Dementia with Parkinsonism in 2012 and passed away 5 months ago. Lewy Body dementia is the 2nd most common type of dementia but few Drs know much about it. It shows nothing on PET, CT or MRI scans so patients are commonly misdiagnosed as Alzheimers. The meds are very different and some that are given for alzheimers can actually cause serious side effects so it is important to find a neurologist who is familiar with Lewy Body. If you have a loved one who you think may have dementia, please familiarize yourself with some of the different symptoms or behaviors of the numerous dementias. Hallucinations, paranoia, “freezing” of limbs, Parkinsonisms, which is, as the name implies, a dead ringer for Parkinson’s disease, to name a few. Mom was in a nursing home for dementia patients and even they knew virtually nothing about Lewy Body. They thought that dementia was Alzheimers-period. When the Lewy Body would freeze her limbs momentarily or she could walk to the lunch table then not know what to do with her utensils or not be able to get out of her chair or to walk back to her room, they would say she was being stubborn or nasty. On one occasion an aide tried to pull Mom out of the chair and to her feet and the aide assumed Mom would stop being stubborn and get herself going once started, she was completely frozen and so she fell flat on her butt on the concrete floor. Mom kept saying she broke her back but sadly enough we thought it was the dementia talking. I took her to the dr a week or so later and they said there was a fracture on the xray but he couldn’t tell if it was an old one or a new one, likely from the fall. A UTI and severe dehydration landed her in the hospital a couple of months later and the effects of it were so severe that she was never able to walk again and upon release had to be moved to a skilled care nursing home. Watching that cruel disease steal away bits of Mom every day and seeing the pain and fear in her eyes was more horrible than I could have ever even imagined. We have to be our loved one’s advocates. At the dementia home, after her fall, we called a meeting for us 3 daughters and the admins and they had the insolence to say “She’s not our only patient you know”, to which my response was “No, but she is our only Mother”. God Bless each of you going through this heartwrenching long goodbye.

    16. I used to work at the Alzheimer’s Association. Dementia is an umbrella term used to describe a myriad of symptoms. Alzheimer’s, Lewy Body, Parkinson’s, etc, all cause memory loss, confusion, loss of person, place and time and are all forms of dementia. If you feel you need a specific diagnosis, see a neurologist, geriatric physician or a geriatric psychologist/ psychiatrist or a behavioral neuropsychologist. Dr. Michael Zelson at Moses Cone in Greensboro volunteered for the Alzheimer’s Association regularly and is an excellent diagnostician. Look for hospitals that have memory loss clinics. Baptist used to have one, but I don’t think they do anymore. Dr Beverly Jones ( a male) moved from Baptist to Thomasville hospital some years ago. If you google those guys and find them, get an apt with them. Both were great. Always look for drs specializing in geriatric issues. Those guys will be up to date on all diseases of aging. My dad had Alzheimer’s for twenty years and that’s what motivated my career decision. I’m one of the people who believes that having walked the walk gives you more insight into the devastation and loss that families are dealing with. Anger, aggression, delusions, hallucinations, and delirium are not for the faint hearted caregiver. Educate yourself fully and be involved in the care of your loved one. Read “The Long Goodbye.” The AD Assoc. in Charlotte has copies for sale or borrow and there are probably even later books to read as well. Prepare yourself for the day when your loved one no longer remembers you, because that will happen. When it happened to my mom and I, we had to remind each other daily, hourly, minute by minute, that the person who looked like our loved one was no longer present in our reality. He was on a journey that only he could travel and we just had the honor of following his lead. Sometimes we were new friends visiting, sometimes we belonged to him but he didn’t know how, and one time he thought I was my mother. He told me I was the love of his life and my mother was standing next to me. Remember that your memories are arranged in layers and it’s those last layers that are destroyed first. I used to run a support group in Archdale before my health took me down an unfamiliar path. Ask for a list of the support groups in your area and GO! It will be one of the easiest and best decisions you can make for yourself. Educate yourself first and find support next. It’s the only way you can survive the challenge ahead of you. My thoughts and prayers are with you.

    17. Has she been checked for a UTI? Urinary Tract Infections can definitely cause changes in personality and are common problems for the elderly.

    18. Take a look at delirium. We are going through this with my mother in law. She has congestive heart failure (CFH), has had a bad case of pneumonia brought on by CFH then a recent fall in which she broke 5 ribs, tore her rotator cuff and gashed her head. Healing is slow and difficult. Being deficient in vit B12 causes confusion, so does low sodium levels. My mother in law has all of these which cause delirium. Her cardiologist told us she had delirium not dementia which is what our family Dr thought she had. A neurologist can check, also. Delirium presents itself the same way as Dementia but can be made better or cured as the patients health improves. Delirium often is mistaken for dementia. My mother has advanced stages of Alzheimers so I am familiar with both.

    19. My husband was having terrible memory problems. He failed a mini cog test. He fell asleep every time he Saturday down.
      We had him tested for sleep apnea. He has a terrible case. You might have her tested for that.

    20. My husband was having terrible memory problems. He failed a mini cog test. He fell asleep every time he Saturday down.
      We had him tested for sleep apnea. He has a terrible case. You might have her tested for that.

    21. Read Dr. Daniel G. Amen’s book “Memory Rescue” He talks about many different brain and memory problems including Alzheimer’s. Not saying it’s a cure-all but offers many alternatives of lifestyle and treatment.

    22. I would say YES!! It was a Comprehensive Neuropsychological Evaluation that told us that my husband “appeared to have Frontotemporal Degeneration (FTD)” which is one of the 10 primary forms of Dementia. A Pet Scan gave us the definitive diagnosis and showed the FTD patterns in his frontotemporal lobes. He had had multiple different MRI’s and CAT scans over the last 10 years but they never showed anything wrong in those lobes. Now that we have a definitive dx we are much better able to understand what’s ahead and how we can cope more effectively with what’s happening.

    23. My husband has had multiple Cat Scans and MRI’s over the last 10 years and his frontal temporal lobes appeared normal. It was only a Pet Scan that revealed the Frontotemporal Degeneration patterns in his brain.

  2. MY oldest sister passed away from this horrible diease. She went through alot, as well her husband did. I worked on a dementia wing for 10 years, seen alot watched people die . Sit with alot of them as they were dying. But when its your family, it hits pretty hard. I know she is at peace, she is with mom and dad. She missed them so much and cried about them. RIP my sweet sister. Until we meet again. My heart goes out to all who take care of their loved ones. Its very hard. You each deserve a halo for what u all do.

  3. please look up Dr. Mark Hyman’s documentary series “Broken Brain” for some very encouraging information. I also recommend his book, FOOD, what the heck should I eat.

    1. Yes, I listened to this too and wished I had known about this when my Dad had dementia/Alhzeimers. He has amazing information.

  4. My mom has Alzheimer’s and lives in a nursing home. I try to see her once a week. I always feel bad when I have to miss. When I am there I treasure every moment with her. When I leave her I always hug her and say I love you. Sometimes she says it back. All memories that I will cherish.

  5. It is hard to watch a love one do things that they would have never done!! Things that they did and couldn’t do any more!!

    1. It absolutely is hard, Joy. It’s heartbreaking. I read early on to focus on the good things they can still do. It was still hard, but I learned to rejoice whenever Mom recognized me or said my name or new the names of her brothers or sang a song with me. And though Mom’s words of hate shocked and hurt me at first, I learned to think of them as a child crying– expressing herself and her pain in the only way she knew. I learned to treasure each sweet moment and smile. And I miss them now.

      1. People with memory loss can commonly still remember songs and lyrics. Those memories are stored as acoustic, long term memories.

  6. I was told the difference in an Alzheimer’s diagnosis and a dementia diagnosis is Alzheimer’s is a terminal illness that eventually causes death. A dementia is not terminal. I don’t know if this is true or not.

    1. Very simply put but true. Alzheimer’s always progresses. May plateau for years in one stage but always progresses.

    2. Alzheimer’s is a form of dementia and both terms are considered terminal. As humans, we cannot sustain life as usual without a working motherboard.

    3. Dementia is the broad term and Alzheimers, Lewy Body, Vascular, are all types of dementia. So think of it as Cancer is the broad term and are breast, lung, brain, etc. are all types. I never understood how a person died from dementia but it shuts down the ability to eat, to breathe, to fight any infection, etc.

  7. I am going thru this journey with my Dad, these words mean a lot to someone in the middle of this horrible disease!

    1. What I found so hard with my mother is that she knew it was happening and she would weep and ask me ‘what am I going to do?”. I had nothing to offer her except saying we will get through this together. There were days when I prayed God would take her because she was so sad and so unhappy and days when I prayed he would let me have here for a while longer. When she passed there was a sense of relief that she was now where she had wanted to be and no longer sad. She wished to be with my Dad and so she was but then I thought of times when I was so frustrated with her or felt so defeatedand that made me feel guilty. It is the hardest thing I have done……..and I have been an ER nurse for over 35 years.

      1. My husband has vascular dementia, he’s had 2 strokes, one when he was 57, the other when he was 79, he turned 80 in Dec. my problem is he doesn’t want me out of his sight, and at times accuses me of cheating on him for 40 years, he says things I’ve never heard him say before about me. He’s been abusive thru out our marriage, mentally and physically, he use to drink, but quit a long time ago. He doesn’t remember anything he’s done to me. It’s hard taking care of someone who does not believe he has dementia, he sits and watches TV all day then is ready for bed by 8 pm and expects me to go to bed the same time. He doesn’t want me to go buy groceries without him, then I have to find a place for him to sit. It is so very hard, especially when I am 80 also. God bless all the care takers. When you are called a whore one minute, then told how much he loves me the next, it makes you crazy.

      2. I’m so sorry, Shirley. Your case sounds especially hard. Do you have children or relatives that help? Can you hire some help and get some breaks or consider memory care? I’m praying right now that God will lead you and give you help. God bless you!

  8. It’s a journey for sure. We took care of Mom at home as long as we could. At some point, you didn’t want her wandering away, and we found a good assisted living situation. When her health deteriorated more, she needed nursing care. The family classes really helped with “where is she in the process now”. The more we knew about the disease, the better her care was. I kept a journal of some of the things she would say (when she was talking) which has been a joy to read now that she’s gone. She was a funny lady. I felt like the last 12 years of her life we were the closest we’ve ever been.

  9. Wow, this is so beautiful. My 92 yo mother had Alzheimer’s for about 6 years. This is a very hard disease as my mother was physically healthy but her mind was gone she went from child to adult back to a child. She was in a very nice care facility for the past 5. It was so nice to visit my mom as she was still her happy positive self but she now lived in her own happy little world. We would listen to all her stories and smile at each other. We were blessed that she was never dark or mean like most people that have Alzheimer’s. My sweet mother just passed away on 3/22/18 with family surrounding her to the end. She was a GREAT woman loved by so many and will be very missed but she is now at peace which gives us all peace❤️

  10. I have seen what dementia did to my father-in-law, and now am seeing what it is doing to my mother-in-law, and to be honest I won’t want to have my family watch me go though that with me, if I were to get it, my mother-in-law use to be a laid back person, but she is changing into a hateful person, and I hate seeing her that way because I know that’s not her, but it still doesn’t make it any easier, she has a lot of melt downs too not ease to watch either, acquitting us of all kinds of things, who wants to watch their loved one go thru that? I know I sound heartless but seriously who wants to watch that happen.

    1. Check for UTI… my Mother was diagnosed 13 mths ago… she has had 4 UTI’s…. each time anger.. confusion… combative.. paranoia.. accusing us all of stealing.. within a week or two after at least a round or three of antibiotics, she is her sweet self again… it brings on paranoia… she is now on a low dose of antibiotic to reduce UTI’s… and she still got another recently… once UTI clears up she still has memory issues but is mean and angry… I can’t stress enough how common this is… and I guess as we age we don’t have same symptoms we had when we are younger… I push water every day…

  11. I am probably a sure thing. Family history, already forgetful. I’m sixty-one. What is wrong with heavy medication and telling my children to remember me as myself?

  12. So beautiful, thank you for posting. My grandmother had Alzheimer’s. It was hard to watch. I thank God my parents are still healthy in their 80’s. I dread the thought that someday I may suffer that condition, and my son will have to watch me decline. Thank you for shining a precious light on the subject, and giving much needed perspective.

  13. I could totally relate to what you wrote so beautifully, chermor2 !! Our mother passed away finally a year ago March, after a 14 year battle with Alzheimers. We too, went through the stages of “just why is she still alive” type questions running through our heads. Finally what consoled me the most was the theory that our Physical Therapist Mom, whose career had spanned 50 years of her life, would have been quite pleased to know she was very possibly helping this CNA and that staff member to decide on a career path. After bathing, diapering, toilet, dressing, getting her up and putting her to bed, feeding her, etc. day after day, we believe that many a staff person had the opportunity to decide whether they were cut out for that kind of work or not. Perhaps some went on to become RN’s or Doctors of their geriatric departments. Some may have been curious about this slow moving disease of the brain and brain stem. They might have decided to pursue a career in Neurology. Others may have decided this was not for them at all, and took the next opportunity to seek a career that suited them better. No matter what the decision, our mother, who was all about having a career, would have been pleased that she played a role in helping someone decide what they wanted to do with the rest of their life. She often said something to the effect of “You may well start out working a job, but later you will want to work in a career wherein you don’t even think about getting paid for doing what you love.”

  14. Thank you for such a godly, thoughtful expression of the truth in a very painful and difficult life process. Your words moved me deeply and encouraged me to keep my heart focused on God during the challenges of life. It is obvious that God is at work in you through all of this! Can’t wait for heaven!

    1. Wow! Thank you, Nancy, for such sweet encouragement! Sorry I took so long to respond. My Dad is in hospice care now. I’m sitting here as he sleeps while I reply to you. God gives grace on this emotional road too. And what a joy that we have heaven to look forward to!

  15. It is such a hard thing to watch. But it’s drawn me and my mom closer than ever. I visit her almost every day. Regardless, she was always there and now it’s my turn. I read a book called “Thoughtful Dementia Care: Understanding the Dementia Experience”. It helped me understand what my mom is going through and how to handle situations.

  16. “The End of Alzheimer’s” by Dr. Dale Bredesen. AWESOME book. My husband was diagnosed with Alzheimer’s last spring (via PET scan). Dr. Bredesen’s Protocol is bringing my husband back. We went completely gluten free December 2017 and wow – the difference in him is AMAZING!! Gluten and SUGAR are poison to our system. We are now trying to see if supplements make any further improvements, but I’ve seen, first hand, how this has changed his decline. Diet is so vital. There are too many chemicals (and too much sugar) in our food today and we are always so busy, we don’t seem to have (or make) time to cook ‘raw’, organic, fresh foods. My husband was given a pill to ‘slow’ the progression of the Alzheimer’s when we first found out and upon research – I found this this would be only temporary. However, our diet change is ongoing and he is so much ‘clearer minded’ as he puts it.

  17. Thx Mary. It’s hard watching a loved one struggle with this disease. As I care for my wife of soon to be 39 years of marriage I can relate to your sadness. But we find joy in the little things. Right?! I’m going to look for that book. We never have enough good ideas.

    God bless
    Mark<.

  18. Judy, what a beautifully written letter to all those who will deal with dementia personally or with an aged parent. It could not have been said more beautifully. My mother lived to 104 and it was a delight to have her with me. She was gentle and had moments of quick wit. Other times, she asked the same questions over and over. It didn’t matter, she felt a need to know. Bless all those who are lovingly caring for a dear one who has dementia. I shall not use the word suffer, for many do not suffer – they simple don’t realize any other life.

  19. Dementia is a symptom of Alzheimer’s, just as it is a symptom of other diseases such as Parkinson’s. It is next to impossible to differentiate diseases based on the symptom of dementia. Do your homework. Read everything you can get your hands on and make lists of questions and experiences for the doctor.

    1. Respectfully that is Wrong. Dementia is the umbrella term just as Cancer is the umbrella term. Alzheimers, Lewy Body, Vascular, etc. are types of dementia the same as Breast, Lung, Prostate are types of Cancer. It is possible and very important to differentiate although until an autopsy is performed it can not be 100% known.

  20. Have you walked the walk? Have you experienced the pain of a loved one who doesn’t know you on many occasions? Have you experienced the emotional and physical pain of slowly watching a loved one leave your side? Have you experienced the pain of their wrath their anger for placing them into memory care? Walk the walk for a few months, then you can better judge us!

    1. Yes, Walt, if your comment is to me, the writer of this post, I have walked the walk. I’ve experienced the pain of my mom not knowing who I was for years. I didn’t experience her pain and wrath for placing her into memory care, because we were able to keep her in her own home, with some paid help. But I have experienced the pain of having my sweet mother yell that she hated me because I was giving her a shower. And I have experienced the pain of my loving mother swearing at me as I changed her Depends and helped her get dressed more times than I can count over the years of caring for her. (This was shocking to me, because my mom never swore when her mind was strong.) And I have absolutely felt the emotional and physical pain of seeing a loved one fade away from me.

      I helped care for my mom, though she rarely knew me, for over eight years. I fed her and changed her and showered her and cherished the moments I had with her, even though often they were difficult and exhausting. The last week or so of her life I rarely left her side. I was with her through the last nights of her life, giving her medicine, calling the nurse, praying over her and crying over her, singing to her and holding her hand. I was with her when Jesus took her Home and left her with a gentle smile.

      It was not my intent to judge anyone, Walt. I was just expressing how these comments about wishing loved ones with Alzheimer’s dead make me personally feel. I have finished the journey with my mother. And I’m thankful I did all the things I wrote in this post. I’m glad I help Mama’s hand, and sang to her and brushed her hair and treasured our moments. I’m grateful I had time to take care of her and read the Bible to her and tell her over and over how much I appreciated her. It was hard. I cried often. I had moments of resentment. But I always knew God was with me and He gave me grace to get through it all.

      I walked the walk for years, Walt. And I’m not judging you.

  21. Alzheimer’s is a new name for an age old problem. We see more of it now because people live longer, and because people aren’t dying of other things that would kill them too young for Alzheimer’s. It is gradual but unrelenting, and definitely hard for families to cope with.

    It is not caused by vaccines (neither is autism), or any other specifically identifiable cause. It is caused by a certain protein that builds up in the brain in people whose bodies can’t break it down, and it causes harm to the brain, choking out and destroying connections that help us retrieve thoughts. There is currently no cure. Some things do help slow the progression,but none are permanent.

    The best thing to do for yourself if you are near the age where you think you might end up with an Alzheimer’s diagnosis is to a)get long term care insurance, b) shift any significant property to your kid’s names around 5-10yrs before you might be likely to need care, so that it doesn’t count against your resources when figuring out what you have to pay out of pocket for care. c) Figure out who should be your power of attorney for healthcare when you are not able to make decisions, and get the paperwork in order. It is really difficult for families to cope with making decisions that might include withdrawal of care, but sometimes they are the most loving decisions- make it easier by making the decisions for yourself in advance in writing.
    d)please have life insurance, at least enough to pay hospital expenses, and to cover existing debt and funeral costs. And make sure the paperwork is in order so that when you cannot keep track of your affairs yourself, someone else can and they make sense. Have a copy of your important documents, accounts, business contracts/subscriptions/bills where they can be easily accessible if needed.

    Love your family by planning far in advance to care for them when they are caring for you.

    1. These are all very sound and sensible things to mind, Danette. Thank you. My siblings and I discuss these matters in view of our Dad being so advanced in age, and us (6 children) being mostly or becoming seniors. Good health, a caring family, and of course, stable finances, are priceless things to secure.

  22. A wonderful written article chermo2! May I have your permission to print this in my hometown newspaper to share with others?

    1. Thank you, Nancy! Yes, I’m happy to have you share it as long as you credit chermor2.com and/or God’s Grace and Mom’s Alzheimer’s so people can connect and read more if they’d like. Thank you for sharing. ~ Cheryl Morgan

  23. Going through this with my mother. My husband and I decided a year ago to move in with my father and mother – instead of putting my mom in a nursing home. That’s our personal preference. Hospice is also here for support and a number of grants to help periodically. This disease is mean and people around me say that it’s more painful for the caretakers than it is for her – but I disagree – because I know my mom. It kills her to not be able to communicate, or dress or feed herself. My mom’s disease is in the later stages but for now she is able to walk around with no problems. I don’t agree that they don’t know us at anytime because I see expressions on my mom’s face and I know – at times – she does remember them if for only a few minutes. Even if she doesn’t have the memories of being my mom, I remind her that she is and she is very good buddies with her daughter “Lisa” that she knows “in the now” rather than back then. Praying is what keeps me strong & I will continue to ask GOD to provide what I cant. In the meantime, just continue to love, respect, and care for them every minute you can.

  24. I really think the my mom has Alzheimers or dementia, but I cannot get her to go to the doctor to get checked out. She says, “there is nothing wrong I’m just old.” I know that is not what is wrong. I don’t know what to do.

  25. Thank you for sharing this. It encourages me so. Our mom was always there for us in so many ways. Pray that I will be there for her without resentment and with the love of Jesus. She loved us with the love of Jesus all our lives. And was so good to us. Thank you for sharing this. Prayers for everyone going through this tough time. The Lord Jesus is the only thing that will get you through the struggles of life. He paid the cost for each one. ❤️✝️
    I am the way the truth the life
    John 3:16

    1. Thank you for the encouragement, Heather. I’m thankful to hear you know Jesus. It is a hard journey but He will be with you! Keep trusting Him for grace!

  26. My mother she’s 86 and is having problems remembering started out six months she couldn’t remember and now it’s couple days it’s hard to deal with when she forgets like she does but I’ve learned through God‘s grace Not to get upset and tell her yes mother and repeat whatever she needs to know because I know she would do the same for me

  27. We are walking this journey with my Dad. You have expressed so many of the feelings we have had. God gives us the grace we need each day and the wisdom when decisions need to be made. Thank you so much for putting into words what so many of us feel. God bless you!

    1. Thank you, Janice. I’m sorry about your dad. My Dad doesn’t have Alz. but he is in hospice care now. It’s hard to lose your daddy. But God does give grace and I’m so thankful for His presence in our lives. God bless you too!

  28. My mother suffered with alzheimer’s for 12 yrs. After the first 5 yrs. or so, I prayed every day for God to take mother home, she was so miserable, and so terrified, and she cried because she thought she was back in her childhood where she was abused. She was not there any more, she lived in such fear. She was a Christian and she was ready, so yes, I prayed to God to take her home and end her suffering.

    1. I understand. I’ve had so much Alzheimer’s in my family. It is the horrible disease in the world. When your memory is gone, YOU are gone. If I get it, I want to make a living will that directs that NO antibiotics, No heart medicines, NO blood pressure pills, feeding tubes, breathing machines, surgeries, or any other extraordinary measures are to be taken to keep me alive when I get to the point that I don’t even know my own children. I don’t believe in suicide, but I do believe I can refuse to be kept alive.

  29. My mother-in-law was diagnosed with Alzheimers 20 years ago. Still walking around but doesn’t know what her own name is most of the time. One thing that has been really good for her is getting her enough sunshine. I set her by the window for about an hour. I am startled everytime to see the improvement in her condition. My father died of the same thing but in about 4 years. He had to be in a nursing home and there was no sunshine. We all need it. It’s Vitamin D for brain function, depression, and over all health. I’m speaking to the caregivers like myself also.

    1. Mom and I chased the sunbeams around the bldg to find places to sit. If it was cold, but sunny we’d bundle up and I’d push her around and around the building in the parking lot. We’d chat about things we saw… nature often gave us nice surprises.

  30. What do I say to my sister that is rapidly getting Alzheimer’s…she recently did not remember our parents being gone… she said why didn’t somebody tell me… she cried!
    Do I tell her the truth?

    1. If Alzheimer’s is confirmed by doctors, so you know that is what you’re dealing with, I’ve read that you should shelter them from hard truths because it causes them fresh pain every time they hear the news. But even that depends on the person. My Mom usually seemed comforted to hear her parents were in heaven, though she’d forget a few seconds later. But if heating the truth is very painful I would suggest picturing what the loved one might be doing in heaven and say that. For example, “I think Mom is taking care of the babies. You know how she always has loved babies… or whatever fits your situation.

  31. A PET scan is needed to see changes in the brain. MRI’s alone can’t differentiate the brain tissue. What my wife had done was to effectively starve her system of any glucose. Sugar and carbs and then they give you intervenous glucose. And since your brain is a sponge for glucose it rapidly takes in the glucose. Those parts of the brain that have atrophied won’t abbsorb and will appear in a different color on the scan results. We had our work up done at Mayo in Rochester Mn.

    Mark

  32. I grew up with a Father with early onset Alzheimers, and my sister had the same thing and died at a young age. As devastating as it is, God will still use them, and yes the spirit of who they use to be still lives inside them. Sure you hate the frustration you see them go through, and the blank person they eventually become. You have to look for the glimpses of the person you love and hang on to that. We do not however, have to accept that Alzheimers is our future, keep a strong positive mental attitude, handle stress properly, get your sleep, don’t abuse chemicals, eat right, exercise – mostly if you get depressed – deal with it. For me it is Faith, whatever it is for you, decide within yourself and fight the good fight.

  33. What a blessing to find your blog today as my cousin shared your post on Facebook. This is exactly the kind of blog I wanted to write as I cared for my mother who had dementia as result of a traumatic brain injury and several strokes. I also worry about myself and the thought of my children going through this is very hard to contemplate. But I know God used caregiving to work in my life in a wonderful way, and I need to trust He will do the same for my children if we come to that. Thank you for sharing.

  34. I met a woman who had mental status changes and her doctor thought it was dementia. They were going to put her in a care facility. Another doctor ordered more testing and found out her vitamin B-12 was dangerously low and was causing her symptoms! Just thought I’d share.

  35. Sad though, that with dementia progression you may not be able to express feelings of how your children should treat you. Tell them before or include the statement in advanced directives.

    1. Thank you, Kenneth! I’m pleased to have you publish the post in your school’s paper as long as a link to my blog is included. Thank you for sharing! Blessings to you too! ~Cheryl Morgan

      1. So, list the author as Cheryl Morgan? Also, I am assuming you manage the site “God’s Grace and Mom’s Alzheimer’s. I just want to make sure my attribution is correct. Thanks.

  36. This is one of the most poignant…on target statements I have read on Alzheimer’s. It is so very tender and true. Every moment you spend with a loved one with Alzheimer’s builds your character, strength, empathy, patience and leaves imprints on your heart and soul that will broaden all the feelings and emotions you have for the rest of your life. The tables in life can change in a moment, in a blink of the eye, as they say. Each of us could be in a situation that we cannot control….and we will be waiting for those precious visits from those that love us and make us feel safe. Don’t ever take for granted the love you receive or the love you can give. They are both the most precious things in life. When you take the time to give of yourself and help another human being, no matter what the situation…you ultimately benefit the most.

  37. I’m sorry that you may feel that comments like these devalue your mom’s life right now but you don’t know what other people that have loved ones with Alzheimer’s Disease are going through. This horrible disease drastically affects entire families. It can cause the elderly spouse, who insists on being the primary caretaker, to then face serious physically illnesses of their own from exhaustion, stress, and emotional turmoil. When the caretaker-spouse dies, what then? People can live with Alzheimer’s for 15-20 years, causing families to be financially ruined. The end of life for a patient with Alzheimer’s is horrific. At this point, not only can they not remember or think clearly, they can’t do anything. They can’t eat because they have forgotten how to swallow. They constantly scream out because they have terrifying hallucinations. Although they can’t speak, you see the terror in their eyes and there’s nothing you can do to stop it. You’re lucky that your mom still has sweet times of love and joy, but please don’t judge others who wish (or even pray) for God to end their loved ones suffering after 15 years. Maybe we draw closer to God as we seek Him and cry out to Him to end our sweet Mother’s suffering. Psalm 116:15: “Precious in the sight of the Lord is the death of His godly ones.”

    1. My mom passed away a year ago. We took care of her in her home, with some help towards the end. I understand a lot about exhaustion, stress, and emotional turmoil. My Dad was still living but unable to be the primary caregiver the last year of her life, so my daughter and I took over his part of the responsibilities. I know all about a patient with Alzheimer’s not remembering, not speaking, shouting and screaming for hours, yelling “I hate you” and biting people who are trying to help. I know about changing adult briefs and using a hoyer lift to move someone who can no longer walk. I know about repositioning someone every couple hours when they can’t turn over anymore.
      I don’t know why expressing my feelings is read as judging. I’m not saying anyone who says or feels these things is a horrible person. I even state I know where they are coming from, but am honestly explaining how the comments make me feel. I can feel things without judging you for having different feelings. I think we all have a right to our feelings.
      And when God brings His children Home to Him, in His perfect timing, it is precious to Him. Which Im thankful for, because my Dad just passed away nine days ago. He and Mom are together again. I miss them both. Now I can focus more on my 95 year old mother-in-law who has been living with us for three years and has Alzheimer’s.
      I’m not judging you, Cynthia. Thank you for your comment.

  38. i hear what youre saying but i lost my mum nearly 2 years ago from this horrific disease, and yes i wished her dead, she was not happy in her little world, she was scared, she was doubly incontinent, had lost all dignity, knew none if her family, who adored and loved her so very much, yes people with dementia are still people but theyre certainly not the people you once knew , they become strangers and you become strangers to them, for anyone that has to go through the devestation of watching a loved one suffer from dementia take it from me, it is heartbreaking, horrific and the most awful 7 years i have ever expirienced , my poor mum never asked for any of it!!! so yes i wish she would pass away peacefully because she was being eaten alive by this terrible terrible disease and dying before our eyes

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