Alzheimer’s on Skype

My grandmother’s health has been failing for some time, and she’s been battling Alzheimer’s at the same time her heart and lungs have weakened. It’s the circle of life, and we know what’s coming. You know what’s coming because you’ve lost a grandparent before like I have, or you’ve watched someone you care about lose their grandparent.

It doesn’t matter. It fucking sucks. It fucks with you. Especially the Alzheimer’s part.

Two nights ago, on Skype, my grandmother yelled at me from New York. She was so angry. She yelled in Korean through the screen.

“Don’t let Noah play in the kitchen! His dick will fall off!”

I laughed at first, and so did my mother who was sitting next to my grandmother. From here in Belgium I consider it a blessing to be able to Skype, and Skype at all with my grandmother. She’s still got some fire in her, but she then kept going. She wouldn’t let it go and she started getting mean about it.

Last night, on Skype, I was retelling my mother a story and my grandmother interrupted. My grandmother yelled at me again. Nothing about Noah, but random memories of the past apparently. She was having an episode. It’s like she didn’t recognize me anymore, all of a sudden. Her words hurt nonetheless. I wasn’t sure what part of her rant was clear, and what part was some lashing out in dementia.

As a grandchild I hate seeing her like that. In that moment she “switches” I feel like a little girl again and I just don’t want her to be angry with me. Sometimes it’s funny in the moment, just to hear your grandmother say the word dick to you on Skype. Sometimes it just hurts and it’s disconcerting still, the day after.

It must be horrible to lose your bearings. I’m scared it will happen to my mother. Of course I’m scared it will happen to me. I’m naturally dramatic and there’s Alzheimer’s in the family. If you all have any personal experiences or non-textbook advice, please share.

For now I reign in my fear and keep up Skype with my mother and my grandmother.

Always dishing,

Jun

 

24 Comments

  1. Geneviève Ryan

    I don’t have advice as I didn’t deal with it much but my grandpa had it. He never got mean when I was around. We did have times where felt for a minute he didn’t recognize me when I visited. Its such a sad reality and it hurts to watch a loved one go through this disease, it affects the whole family. Thinking of you, momz and grandmomz!!

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  2. My Grandmother also had Alzheimers disease ..She died at 97 .My Aunts ,and Uncles were very careful of what they talked about around her ,they didn’t talk or laugh too loudly ,because this would excite her . My Grandmother ‘s eldest daughter died ,and the family of course didn’t tell her ,but a few months before she died (true story ) it was like she woke up from a long nap . She asked when did her daughter die .She knew .How ???? we dont know .When my Grandma died she was in her “right ” mind . We attribute this to her being a born again christian ? We don’t know ,but when she took her last breath she knew all of us ,and she was no longer tortured by this very cruel disease . Just a thought .

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  3. kcsmum

    My darling Grandma had Alzheimer’s as did her mother and all 3 of her sisters. So did her daughter, my aunt on my dad’s side. So yes – I panic everytime I misplace something or forget a word. Grandma went to a nursing home in her 60s and lived for 15 years. A sick mind trapped in a healthy body. She remembered me almost to the end, yet often would think I was her sister. All I can tell you is don’t stop loving her. It is very frustrating at times and can be painful & confusing. But even during an episode if I looked deep enough I could always find a glimmer of the woman I’d loved my whole life. You are all in my thoughts.

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  4. Melissa Newling

    My mother has started exhibiting signs of dementia over past few mos. She calls terrified at 3:00 in the morning claiming there are men in her bathroom. She talks to people who aren’t there, and becomes paranoid we are scheming to harm. It is heartbreaking to see the person who always made you feel safe and loved become so vulnerable , scared and confused. The best advice I’ve found is that you now need to show them the patience, love, and care they gave us. Life comes full circle.

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  5. I am dealing with these issues with my mother. You are correct and it is tough to keep a positive attitude. Do remember that sometimes what comes out of the mouth is not what was meant to be said. Somewhere in the brain the linkage between thought and speech gets muddled. So she may have thought she said he will get hurt, but came out as his dick will fall off. The trick is to try and figure out what she thought she said and respond to that. So your response may have been that you would make sure he doesn’t get hurt.

    I too worry about my future. I put a bit about this in my blog a few months ago.

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  6. Karen

    We just buried my step-father a little over a month ago. He (we) suffered from dementia for the last couple of years of his life. The final six months were really bad. All of us were caught off guard when he got as mean as he did. Like you mentioned, Jun, it was hard to tell when he was thinking clearly or speaking out of the dementia. His physical health was terrible, and he was bedridden and in pain for most of this year. It was his wish, and my mother’s, that he be taken care of at home until he died. This put a wretched burden on my two youngest sisters who had to do all the heavy lifting and what not for him. One of the sisters is very tender hearted and took many of the things personally that he said to her when he was most in pain. She is battling with that to this day. In her head she understands that he wasn’t in his right mind, but a part of her fears he meant the things he said. It was all so very sad. He would have hated being like that to his loved ones. To his credit, there were times when he was really sweet and loving, too. Those are the things we have to focus on, not the meanness that wasn’t really him. I hope your grandma gives you those loving moments also so you can have a few more good memories.

    Alzheimer’s and dementia are such vicious diseases. I’m sorry it has touched your family.

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  7. Alzheimer’s is such an insidious disease, It affects people in myriad ways. My sister-in-laws mother had it. She had a perfectly clear memory of things that happened years ago, but could not remember what was said one minute ago. She knew and remembered people she met, as long as she met them before her disease progressed too far. Miss Willie her daytime caretaker was probably the last “new” person that stayed within her mind. She was fixated on My SIL Regina. Needed to know where she was every minute of the day. Once she accused me of lying to her when I told her that Regina was at work. Calling me by name yelling, “Don’t you lie to me Richard, you little ass! They lived with her in that condition for about 4 years. Then in her last 2 weeks she was progressively more demanding That everyone was conspiring against her. So much so, that it exhausted her and her heart finally just gave out while she slept after a particularly rousing episode. My cousin also had this disease, She was afflicted differently. She only knew her husband and her Brother’s faces. but would tell me stories about when I was a child to me, not knowing I was the one she was talking about. She was ever so gracious. “Are you hungry?” “Do you want something to drink?” would be asked over and over again during the course of a conversation. When Hurricane Katrina hit, She was moved from the home she was in to another home in North Louisiana. She was so confused and had such a difficult time with that move, She passed away within a week. Alzheimer’s is never an easy thing to deal with. But you must realize that the things they say and do, usually have no bearing in reality.. And you can take comfort in the fact that they do not realize what their action are doing to the ones they love. All we can do is love them with all our being and try to make them comfortable. Sucha a heavy blog after your week break. Whew!

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  8. My mother had a frontal lobe stroke which gave her dementia but hers was loss of control of emotion and behavior. already a not nice person she became dangerous. And verbally abusive. dad would take her to the beauty shop to get her hair done and then call me because he knew he could talk without her horrid verbal behavior taking over the conversation.. It was sad and scary and I felt sorry for myself.
    and then my best friend started to fade. she has alzheimers and its gotten bad. she still manages to control her anger but she will tell me she feels it. anger for no reason what so ever. sometimes she says she gets angry and its not really at the person she wants to yell at they are just there at the wrong time. I try to not take it personally but I do. its my friend of many many years and she isnt really my loving friend any more. I feel so helpless. I do know what you feel and its so hard. All I can really offer are Hugs to you darlin.

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    1. debchr

      Bonn,

      I feel for your pain. My Mom has Alzheimer’s, and she has very few friends left (alive), so has fewer and fewer visitors.. Her dearest friend rarely comes around because it upsets her so. We understand because it’s rather depressing to be around.

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  9. suem2

    Very sad indeed and a fear I have. I told my kids I would not want to live if I couldn’t recognize the people I love so dearly. Truly sad. I am so sorry you and your Mom are dealing with this. It has to be heartbreaking. I truly sympathize with anyone who has it or the family dealing with it. Much love Jun.

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  10. OkieChris

    My grandma had alcohol induced dementia. I was always her favorite grandchild so I could do no wrong until she got sick. She thought someone was plotting against her to steal all her money. She also was very funny in a sad way. She was pissed of one day Mom & Dad took jet to the San Diego zoo because “What kind of zoo doesn’t let you play with the monkeys?” She wanted in the cage.

    I’m sorry you are so far away out makes it harder on you. My solution with my grandma was to just agree with whatever or whoever she thought was going on. They don’t understand not remembering & it frustrates them when someone tells them they are wrong in what they are thinking.

    Next time she tells you Noah’s Dick will fall off of you let him play in the kitchen, tell her you’ve heard that before & wouldn’t ever let that happen to Noah.

    Love you mama ((hugs))

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  11. karenrakay

    As u know..I am an alzhiemer/dementia nurse…its always gonna be the disease that is coming out..I try to educate families.. but education doesn’t really stop the pain.

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  12. Joanne Yong

    I personally make an alternative medicine with nanoparticles of gold that is supposed to have amazing results with Alzheimer’s, I don’t know anybody with the disease but I take it everyday and I surprise myself all of the time with facts and old memories that have been coming to me. Anyway, I don’t want you to block me as a spammer because I love your blogs so I shall say no more. So sorry about your grandmother.

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  13. MarluvsBB

    I lost my Mom to Alzheimer’s in the 80s. She died in ’97. Previous posters have mentioned things I won’t repeat, but the greatest lesson I learned from my experience was patience. Early on, I just thought she was getting cranky in her old age and I’d argue with her. I didn’t have much patience then at all. When we realized what was really happening, I took a step back, and talked to someone who knew about the disease and got myself educated on the subject. The best thing you can do basically, is just agree with her, or as Mike said above, try to figure out what she may have been trying to say. (the linkages between thought and speech are now mixed up). Whatever you do, don’t get angry at her. You will get frustrated at times, but don’t get angry. It’s not their fault, and the last thing you want to have happen is see the hurt in her eyes if you snap back. She won’t understand why you’re angry at her. Alzheimer’s disease is often referred to in the long or longest goodbye. There have been some advances in medication since the 80s, when there wasn’t much to offer my Mom. I hope your Grandmother is able to access good medical care.

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  14. I was very close to my aunt, and she developed dementia, which the docs said is like but not the same as Alzheimer’s. Either way, they both suck! In her later years, she only saw me as I was when I was about 8 or 9. She called me her nickname for me, and was always concerned that I’d come to see her without my mommy and daddy’s permission. I went along with it, and she told me lots of wonderful stories about stuff we did when I was little. Then I’d cry all the way home. It’s a horrible disease, and nothing can change that.

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  15. Jun, this is my job. My clients are elderly and I have had 4 that suffer from Alzheimer’s. Being patient is key but it’s much harder for the loved one who cares for them. Which is where I come in..they need a break! Know they are more frustrated then the loved ones because they sense something is not right. They get very scared, confused. One client hid everything valuable to him under his mattress. Then forgot and accused us of stealing. I have had a client that needed to be shown a picture of his wife who was shopping many times while she was gone shopping because he had no idea he was married. I have one client who has had it for 19 years! Diagnosed at 62. Your family needs care givers in this field to help out and give them a break. My best friend had her Grandmother move in with her and with in a year knew she could not do it alone. There is no cure but there is help.

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  16. HayLaura

    Hi Jun, my father died 13 years ago from Alzheimer’s. He was 70 years old. He was diagnosed at the age of 60. It was just the little things at the beginning… not remembering where he put things, getting a glass of water and putting it down in a room and then getting another glass of water, because he forgot he already had one. My mom would come home from the grocery store and she would ask him to put the stuff away and he would put the ice cream in the refridgerator and the butter on top of the fridge…. but he ended up really scaring himself when he drove to the store and couldn’t find his way back. He knew right then and there he couldn’t drive anymore. He was smart like that. It was like when he went to the Drs in his 50’s and the Dr told him….. Bill you have to stop smoking and drinking, it’s going to kill you and he came home and threw all of his cigarettes away and stopped drinking. Just having the Dr tell him that, he knew he had to stop. But he had No Idea he would get Alzheimer’s especially at such a young age. My sons were in their mid teens and we would go visit my parents… my dad was in his late 60’s and his memory was really fading…. I went for a walk with him and he asked me if i was married or if i had a family. My husband and sons were sitting in my parents house. It made me so sad. 🙁 I said Yes dad, i have been married for 20 years and i have 2 boys. He didn’t remember….. He used to walk through the house going from one room to the next to the next over and over again just shuffling his feet. He used to watch TV, he used to Read, but he didn’t have the patience to sit still and enjoy watching his favorite shows or read a good mystery novel. I am going on 54 and Yes I do worry ….. will this happen to me….. My dad asked everyone who came to visit him to kill him, because he hated living like this…. he didn’t like being around my mom , because my mom was mean to him. She didn’t have the patience to take care of him. His last 6 months of his Life my mom put him in a Alzheimer’s Home. It was terrible…. Just to see all of these men and women shuffling around the halls with sad faces on and blank stares. Who wants to live like that ? I myself believe in Euthanasia …… When you don’t have quality of Life anymore and you don’t want to be alive, I think you should be able to take a pill or given a shot and put out of your misery like we do with animals. My mother was paying $ 4,000 a month to keep my dad in this facility and one day she showed up and my dad had scrapes on his face, hands and knees. He had fallen down some stairs, but the people working there said they didn’t know how it happened. 🙁 I can’t even imagine working in a place like this. It has to be so sad and so depressing. My neighbor’s mother is 96 years old and they are trying to get her to move into a Memory / Alzheimer’s facility 3 minutes away from our street. It will cost them $ 6,000 a month. I do not want my husband to have to pay that kindof money for me to walk around like a Zombie not knowing who I am or who my family is. It just isn’t right. 🙁 Sorry about your Grandma <3

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  17. Shannon Drew

    Hugs Jun. My dad has Alzheimer’s & now dementia. He’s in a nursing home now because my mom couldn’t care for him at home any longer. My mom isn’t in good physical health (diabetes,kidney disease & joint problems). I’m only 34 & feel sad they both have bad health. Like you said Alzheimer’s is especially hard. With my mom she can still read,talk,go places & she’s the same inside. My dad is very much alive but it’s like he’s gone. It tears me up every time I visit. I always say it’s made me appreciate every day more because you never know how you will be in the future. YOLO. My grandma dad’s mom also bad Alzheimer’s & now dad does. I’m very scared I will get it too so I understand that feeling. It’s such a terrible disease. More hugs.

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  18. debchr

    Jun,

    I understand what you’re going through because I’m going through this with my Mom (Alzheimer’s disease).

    At some point during the past year, my Mom started talking in what is known as “word salad,” because the words are jumbled-up and don’t make sense to those listening. Mostly, we attempt to understand what she’s attempting to say, just through knowing the way she normally spoke, her likes and dislikes, a few key words and the expression on her face. It’s very difficult, attempting to respond to her in conversation – which we try to make therapeutic, or positive, meaning we TRY TO reassure her, make her feel loved and accepted and let her think she is actually communicating effectively (she isn’t), but she’s aware that she isn’t, so if we don’t understand her, she becomes upset.

    One of my sisters and I alternate months, living with her in her home (we each live in other states). Right know I’m at my home in Florida and hear from my sister that our Mom has started occasionally adding “vagina” to her word salad! That should be interesting when I get there in a little over a week! lol That shows a bit of her ‘refined’ nature, because she would never say any other word for that body part! lol

    You MUST attempt to see the humor rather than flailing-about in despair, because it can really drag you down. We try to see her as an adorable toddler, like Noah – and is he ever cute!

    She really is like a toddler. My sisters said, over the weekend, they, and Mom’s two grandchildren were sitting around the kitchen table while the granddaughter worked on a stained glass project. A cup of grout drying accelerator was on the table, and Mom suddenly grabbed it and took a sip – which she did not swallow, apparently. She was making sounds and pointing to her mouth. They got her to spit it out and called the Poison Control Center and learned the substance is poisonous. The poison control center sent an ambulance to her home and she was taken to the ER! She was okay from the substance she ALMOST ingested, but they learned Mom’s anemic and has a UTI, so more huge pills were added to Mom’s large pill regimen – and it’s ROUGH getting her to swallow them. Most have to be crushed and mixed with beverage for her to take them..They said she’s on a new ‘kick’ of putting things in her mouth. Lord…! Yep, she’s out little mischievous toddler!

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