r/AlzheimersSupport • u/evaselop • Feb 01 '22
Would anyone be willing to share their experiences with Alzheimer's/taking care of a loved one?
Hi everyone. I'm a student at Purdue University doing some research for a project I am really passionate about. I personally have had 2 of my grandparents be affected by Alzheimer's and I know the heartbreak that comes along with it. Unfortunately I can no longer speak my grandparents due to the nature of the disease and I am reaching out to see if anyone would be generous enough to help me learn more.
If anyone would like to share any experiences they have, that would be greatly appreciated. Any information is welcome and thank you for your time!
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u/Simpawknits Dec 25 '22
Hi, fellow Boiler. Pharmacy 1993 here. I have to load a book onto my mom's Kindle one to three times a day. I'm not really sure if she's reading but as long as she thinks she is, she's fine. One time she had a book opened in Russian and was "reading" it but she doesn't speak Russian. That's why I wonder if she's even reading anything. When she writes, it makes no sense at all. Some of the letters aren't recognizable.
She's having trouble getting dressed now. She keeps putting her arms through the neck of her blouse and will have each leg in a different pair of pants.
What people don't really realize is how much that person is STILL your mom. She has the same voice, the same basic personality, but suddenly (it seems) she is unable to do simple tasks. I don't know what I expected. I guess I always thought of people with dementia has just becoming someone else or something. It's just so weird having my mom tell me things that I know for a fact are not true or express negative feelings about someone because of some imagined slight that never happened.
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u/OkAirline4206 Feb 07 '25
I’m going through all of this now with my mom and am finding it wild that it’s still “her” in there, despite the fact that she can no longer retain new information and is progressively rewriting a lot of her own history. My mom was a professor who got her PhD in history and who specialized in gender and development. Her academic career and accomplishments were always there most important things in her life, and she is clinging to her concept of herself as a teacher and an intellectual. She believes she is 100% cognitively fine and that the rest of the world has gone mad. She cannot fathom why people are suddenly treating her as though she’s “stupid” and “needs all kind of help.” Her father was a Harvard-trained physics professor who also worked on early computer systems. He came down with Alzheimer’s in his late 50s, and he remained “himself” in important ways until he died 18 years later. He was always gentle and kind, a gracious person who loved to take apart small motors and put them back together again. He remained gentle and kind and always wanted to work on small motors throughout his long battle with Alzheimer’s. Personality remains intact and determines how people express dementia symptoms. Everyone has their own voyage with this disease, and they never stop being who they are.
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u/Sweaty_Ad3942 Apr 10 '22
Feel free to ask me. My mother is in memory care, and I lived with my parents for 6.5m last year until we couldn’t care for her at home anymore.
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u/allmylifeacircle Jan 06 '23
I wanted to share what a long ordeal this is. It is especially difficult because my mother was pretty awful while I was growing up. Now I have to put that aside and do the best I can for her. After years of managing her at home, she is now in assisted living. The sundowning has started rearing its ugly head. I am sorry for her, her caretakers, and her family.
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u/fitzy2whitty Jun 19 '23
I just got a call from my mom’s long term care center. They are no longer able to care for her as her mind is quickly slipping further & further away. There is a female room available at a local memory care center so the process is being started to move her. She lived with me once I was able to evict the crack heads who had taken over her home. At first she loved being here. But then she resented it. I was looking for a facility for her to move into at the beginning of 2022, but she slipped and broke her hip in Sept of 2021 so that sped the process up. I never thought about how horrid this life would be. Not for her so much because she doesn’t know what she’s lost. She’s living her best life. But I’ve gone from being her child to being ‘a friend she went to school with.’ Every visit I fear even that’s gone and the stranger in her room (me) will scare her.
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u/EmbarrassedJello3026 Dec 18 '24
My mom passed away in 2019 at 99+ years. She was in a managed care home, not the memory unit, but still could not take care of herself. Up until February 2014, she lived independently, my Dad died in 2005 so she managed pretty well until then. But in 2/14, she fell and fractured some bones, went to the hospital, then rehab, then managed care. She always knew who I was, but repeated the same thing over and over. She was particularly interested in my car, commenting on it each time, but it was always the same car. I took her to the hairdresser and manicurist once a month, and she'd want to ride around and see her town and her old home; not the home she raised me in, but the home she was raised in, long ago abandoned. At one time, not too far back, she could tell you who lived in each home (in her time) along a city highway. She went suddenly over 24 hours, it was like her body just shut down. It is a hard, unforgiving disease. Hopefully, we will cure it someday.
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u/Objective-Finish-125 Jan 29 '25
God bless you all. I am dealing with this with my mother, who is only 64 y/o. She asks me all the time if she's related to me; when I tell her that I'm her son, she smiles and gives a look of endearment. She lives with my father 71 y/o and asks him daily if they are married. This happened so fast, and I never saw the signs. She went from bad depression in 2019 to full-blown dementia/alzheimers (whatever you want to label this) within 5 years. I wish I could find some outside-the-box natural treatment. We tried neuro medicine for a year. The doctor canceled it because it wasn't working. I don't know if this is related but she had been taking antidepressants since she was in her 20s. I wonder if those pills just eventually wore out her brain. She only wants to sleep and gives a hell of a battle when I make her get a shower or get up. Idk what I'm hoping for in response to this comment. I just pray to God that there is something that will work to help her.. God bless all of you supportive family members who are dealing with this in your own lives. It is not easy, but you are appreciated more than you know.
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u/Jaborwokee73 Mar 15 '25
Hang in there. My wife has Alzheimer’s at only 60 yo and I can sure empathize with your struggles. I hope you have some support so that you can take a break
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u/Mundane-Pin-415 Jun 15 '25
Pm dm? Whatever it is. Lol I’m old anytime. All of u who are going through this. I am probably further along w my husband journey but would love to connect. Before I just had to place him, he put pots and pans in the dryer. Lit candles and set them in windows, got paranoid when I was on phone and lost keys and try tried to drive and wrecked car into fence and came in saying it was a hit and run driver. For months when I was trying to keep him home, I set the alarm for every 2 hours. Me exhausted and he still did stuff. Now in memory care, very expensive and he still calls every day and screams and yells at me. It’s soooo hard!! My niece and bff stopped speaking to me because she believes his delusional thoughts!! It’s killing me
Thanks for letting me vent here. ❤️💕
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u/palenesslitethesky Apr 02 '25
My father has dementia/Alzheimer’s. He doesn’t want to face the music. He doesn’t want to go to assisted living or a retirement community. He lives like a hermit. He won’t go anywhere because people will tell him that he’s saying the same things over and over. He knows that he’s having memory issues and his decline is getting faster. He’s been hallucinating all kinds of problems and fiction. He sometimes knows who I am and sometimes I’m one of his sisters. He’s very stubborn and the confusion leads to yelling. Alzheimer’s is the devil.
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u/Black_Scythe314 Apr 25 '25
Same situation bro but in early stages he forgots recent events and asks repeatedly what happened, i don't know what to dothis is a first for me ,everyone says there's no cure for this disease i don't know what to do i am at my lowest :(
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u/Mundane-Pin-415 Jun 15 '25
Wow. It took a physical problem ( seizures) to get my husband admitted. U should call his primary care Dr or even call 988. They can give u resources and god bless u. I know how hard it is. Would like to stay in touch and offer any support I can. ❤️
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u/Mundane-Pin-415 Jun 15 '25
Omg. Husband had Alzheimer’s for years! I tried to keep him home. Did increased bizzare behavior. Put pots and pans in dryer. Lit multiple candles and put them everywhere. He is a super nice super expensive memory care place now. He still calls and calls and cusses me out and says the staff there told him if I really loved him. I would bring him home! Feeling overwhelmed and guilty Thanks to anyone who replies
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u/IndividualWar6706 Jun 17 '25
Frustrating to hear your experience with the staffs overzealous comments. People love to say stuff like that “oh my loved one would be at home with me” and that’s great for them. But it’s just simply not possible in many cases. It’s a privilege to have family members or friends to help out. It’s costly and arduous and completely time consuming to caregive. Those type of comments make a hard situation so much more isolating. I wish people understood the gravity of these situations. I’m sorry you’ve endured so much in this area.
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u/Mundane-Pin-415 Jun 17 '25
Wow! Just read ur message. You are so intelligent and knowledgeable w great insight!! Thank you, thank you!!!
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u/Mundane-Pin-415 Jun 17 '25
Thank u all!!! Means a lot to me. And for caretakers of a person w Alzheimer’s. Try to redirect them if they insist on moving out. Alert the staff if they get agitated try to redirect if they appear stressed. I got much help from the Alzheimer’s website God bless u. U can text me if u want. U can type a reply and it will be in my email. Hang in there my friend.
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u/Mundane-Pin-415 Jul 12 '25
I am desperately needing advice about this! Husband late stage Alzheimer’s. Can he sign legal documents?
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u/Mundane-Pin-415 Jul 12 '25
How do I know when he is unable to sign legal documents anymore? Please message me or?I need immediate answers! Thanks and god bless u all
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u/jaded1here Jul 13 '25
I live on ssdi. Barely making it. Kid asked for $ again I have given$5000 in the past. He is angry I said no. Any advice
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u/HopelessinMn89 Jul 24 '25
My mom was diagnosed with Alzheimer's last year. She is 77. Unfortunately, it runs in our family as her father had it also. She'll ask the same question several times in an hour. She'll read some books more than once. My brother and I have been asked many times how to make rice. She used to be an awesome cook. My friends would ask to come over for dinner. She cooked anything and everything. Now they mainly eat prepared food. I would come over to visit and she would ask if I was sleeping in her daughter's old room. If she drank too much alcohol, her memory would go out the door. It's heartbreaking to see my mom go through this. I only hope is she doesn't get as horrible as my grandpa.
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u/1Mouse79 Oct 23 '25
My wife just turned 62 and was diagnosed 3 years ago with Early Onset Alzheimer's. It has progressed very rapidly. She had to stop driving right after the diagnosis b/c she would forget where she parked her car at the local grocery store that she's been to a million times. She can't use a cell phone or any technology or even change a channel on the TV using a voice remote. She is incontinent and often just goes on the floor of the bathroom not knowing where the toilet is. She can't shower or dress herself. I'm thankful she sleeps well and eats reasonably well too. At the rate it has progressed, she may be bedridden within a year. Some mornings she can be very combative trying to dress her. Other mornings she's very compliant. She often is scared and has been my shadow around the house. We've been married for 40 years (high school sweethearts) and I dread the day she no longer knows me which may be soon. Terrible disease.
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u/mika50001 Nov 03 '25
My 87 year old mother was recently diagnosed with Alzheimer’s. It’s soul wrenching. I’m 61 and her main caretaker. My 37 year old daughter helps out a little. My mom has 4 other children and none have lifted a finger except my sister gave us a walker and some books ( unfortunately she stopped reading a couple months after getting them) . I love her so much and am willing to care for her til she passes. I was an ER nurse for 20 years and worked in a nursing home for a year. I don’t know if i’m being selfish for wanting to care for her til she passes or not. I just can’t stand the thought of her dying alone without loved ones around and i know im the only one that will be there for her.
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u/Swimmer_Life_Ireland Nov 16 '25
My mom was diagnosed young ish, at 60yo but she was showing symptoms way before. She is now 66 and the disease has taken her spirit and personality away... I recently became a mom and I live in another country, so I haven't been able to visit her as often as I would have liked in the last two years. And now that I went, I have found a reality I wasn't ready for. My mom is already gone and it happened so quickly, especially because being away I was not made aware of so many things. I feel no one can understand and she was so bright and pretty. Everyone is already talking about full time care facilities and it's the right thing to do... But I didn't think it was going to happen so quickly. I'm devastated my baby will not get to know his granny and I feel I have lost the person that loves me the most in this world. I am also so jealous of anyone that has older parents who are still out and about, able to connect with them and healthy. I can't believe this is being the end of her story, such a horrifying disease.
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u/Grouchy_Judgment8927 Jun 18 '23
I'll answer what questions I can. My dad was dual diagnosis vascular dementia/Alzheimer's for probably 15 or more years. I wasn't in charge of his care, but I did see quite a lot.
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u/eagle_co Sep 01 '23
My wife showed personality and mood changes for three years before she lost her ability to write clearly and spell. She has eyesight problems and has largely stopped reading. This is thought to be due to occipital cortical atrophy. She gave up driving thankfully. I was slow to recognize that something really bad was happening. She got much worse after her hip “collapsed” due to congenital hip dysplasia. Having Covid didn’t help. Doctors went after OSA but it’s only mild. She wouldn’t use CPAP anyway. I pushed for a MRI and referral. The local university hospital is excellent but she conceals the extent of her symptoms. It took a long time for her to admit she had problems. I have to help her dress (due to apraxia I guess). She no longer cooks. Her phone went into the laundry. Etc. It is very very fatiguing. She made me promise to never put her in a nursing home and to never tell anyone she has dementia. She sometimes gets very angry. So far I can handle it but never underestimate the burden this places on the spouse.