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2022 Was Hard - trying to find my way

Hi I'm new here... This year was difficult to say the least.  I live in northern Illinois and my brother lives in Kansas.  My parents are from IL but moved to Kentucky about 13 years ago for retirement.  My father passed away in February 2022 of COVID, and my brother and I had to make very rushed decisions what to do with my mom.  She was diagnosed with dementia/possible alzheimer's in early 2021, but she had memory issues for at least 5 years prior to that.  She was not capable of living in that house alone, and we had to move quick.  Since my mom was originally from IL we decided to move her up with me, and I had to frantically find a place for my mom to live.  My husband and I both work full time and we have a special needs daughter, so having her live with us was not going to be able to work out.  We were lucky to find a wonderful facility.  My mom is now moved in and doing well, but I fear she is forgetful fast.  She repeats so often and I use the patience I have learned from my daughter.  I have taken my mom to doctors appointments, eye doc, dentist (which were all way behind) and even a neurologist.  I see my mom every week and make sure we have quality time together.  She is getting used to her new life alone.  I helped her decorate her apartment with pictures of her and my dad, to keep his memory alive.
She talks about him often, but today I got something that just made me very sad.  I know these things happen, but this just really got to me.  During my dads life, he suffered from bipolar.  He had many bouts of depression, and he had been admitted before, but he never wanted to commit suicide because he never wanted to leave my mom.  My mom had emailed a friend earlier today (my brother watches her email to check on her activity) and she was just chatting.  She said that "I'm sorry to say that my sweet husband has taken his own life.  He was bipolar and his depression just got the best of him.  I miss him so much!"  How is this possible to block out all of this??  He was on hospice, she was beside him the entire time.  I am so utterly sad.... and don't want my mom to believe that this is how he died.  Do I just let this go?  

How do i deal with random things my mom says like this?  I am trying to do the best I can but sometimes its just too much.  I feel guilty if i dont see my mom every weekend but sometimes its just too much for me and i get burned out.  Is that normal?   This is the first time I have ever posted or found anyone to listen that might have any understanding of what I'm going through.

Thank you all for listening to me.  I have so much more to say, but I will save it all for another time.  

Tina

Comments

  • M1
    M1 Member Posts: 6,788
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    Welcome to the forum, so sorry that your family is going through this. There's another thread today about confabulation-she may have convinced herself that this is what happened. Confronting her about it is pointless and will just make her defensive and upset. Glad your brother is monitoring her emails, it occurs to me that it may be time to curtail her internet use.
  • BassetHoundAnn
    BassetHoundAnn Member Posts: 478
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    Hi, Tina, and welcome to the forum. Many of the things you describe are things I went through with my mom after I moved her to our city to take care of her. When she was in Stage 5 of Alzheimer's she could no longer remember how my dad died, or how her second husband died. I remember how shocked I was and how gut-wrenchingly sad it was. I had to keep explaining to her how they had died which was traumatic for both of us. As with your parents, my mom was with both my dad and her second husband when they died, nursing them and caring for them with help from hospice. How was it possible she had forgotten all this? 

    When I moved her to a memory-care facility, when she was in Stage 6, she was convinced that her second husband was living there with her. She would go searching for him every day and grew convinced that he was hiding from her. I wouldn't tell her otherwise, and would simply nod and play along. She often thinks long-deceased siblings are also there at the memory-care facility with her and searches for them. 

    This is a horrible disease for everyone. 

    Like you I often feel guilty when a few days pass and I don't visit my mom. But it's hard, so very hard and sometimes I need a breather from the pain and sometimes I too feel like I can't emotionally handle it any longer. In addition I also feel physically exhausted at times from all the chores that come with caring for her, watching out for her, attending to the paperwork even though she's in a facility. It's a long tough journey which anyone here can attest to and sympathize with. 

    Many here recommend counseling and that's an excellent idea. Calling the Alzheimer's Association and asking to speak to one of their (free) counselors is also a good idea. I know many who've gotten great help and advice that way. 

    Again, welcome. I'm so sorry about everything you're going through. 

  • harshedbuzz
    harshedbuzz Member Posts: 4,479
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    Tina--

    Hi and welcome to our little clubhouse. I am glad you found this place but I am sorry for the reason you are here.

    Firstly, I am sorry for the loss of your dear dad. You and your brother did remarkably well in the context of his passing to move your mom to a safe place. You are fierce. 

    This email suggests your mom is confabulating which is not unusual among PWD. Conflated memories happen when a PWD recalls an event but loses details associated with it- the who, what, where, when and how- and backfills it with random information that may be associated with other people or events but that might make sense to someone who didn't know the real story.

    My dad did this almost constantly. Many of the stories he conflated were associated with strong emotions both pleasant and sad. At the time it very much felt like he was re-writing family history as he would credit me with awful things my late sister (his favorite and mini-me) did.

    One particularly interesting example was the story dad told the man who bought his car. Dad described a beautiful date night with mom out in his roadster driving along the coast. My mother suspects he was recalling a time when they were newlyweds (1957) on Cape Ann MA but dad described it as Cape May NJ (where they summered in their 30s and 40s) and told the man he was driving a Miata (mom's 50th anniversary gift- not the TR-3 from his days in MA or the MGB from Cape May). I was confused, but the story did make a kind of sense and captured the emotion of the time really well. 

    I suspect your mom's email is a form of this. Perhaps as your dad's wife, him dying by suicide was a legitimate worry that she lived with and now that he's gone she may be hazy on the details and making the assumption that her version is what must've happened. In dementia, memory tends to be LIFO- PWD tend to recall older information and memories better than those that are more recent. In dad's case, he sort of time-traveled and we would notice he'd talk about long gone friends and family or work colleagues from decades past. 

    It's hard to offer a definitive answer around who you should proceed in terms of correcting her. Generally speaking, it's best not to try to convince a PWD out of something that has become their reality. When my dad accused me of stealing $350K from him (money he lost "investing") rather than defend myself or remind him he lost the money, I apologized and promised not to do it again. Thats said, if this notion pains her (and it might not) you might try to gently dissuade her by telling her a sanitized version of the actual events. My dad went through a phase where he believed my mom was seeing other men. When she broke the cardinal rule of Dementia Fight Club- never try to reason with a person who has a broken reasoner- it only made him angry. But if I lavished praise on how wonderful a husband he was and said mom could never look at another man he accepted it and was relieved. 

    If she seems upset about her version of the events surrounding your dad's death, I might try gently correcting her once to see if it brings her peace. If it does, rinse and repeat. If it doesn't, let it be. You can always correct those who have a right to know the truth behind her back.

    It sounds like it is hard for you to visit your mom. For me it was easier to do a lot of very short visits rather than try to make a day of it. I stopped by the MCF about 3 times a week mostly because my mom found it difficult to visit. I was usually only there 30-60 minutes and never came empty-handed. I usually brought him something good to eat or a magazine or something. One thing some families at dad's MCF did was to hire a companion to visit a couple days a week to spend some 1:1 time when they couldn't.

    Given that your mom is at this point in the disease progression, I would be wary of her all alone out there in cyberspace. Do you have her money locked down where she can't access it if she is scammed? Is her credit frozen with the 3 major credit bureaus? 

    HB

  • SusanB-dil
    SusanB-dil Member Posts: 1,149
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    Hi Iamfierce - welcome to 'here', but sorry for the reason.

    Just wanted to add to the excellent advice already posted - That this is so true that the confabulation is not unusual. My mother thinks I am her sister, and my brother is sometimes her own brother who died when he was 12. We believe that sometimes she may confabulate that her brother somehow lived (possibly trying to process who my brother is, for her, at this stage and time).  My MIL will also tell some doozy of stories from when she and FIL were younger. We just go with the flow.  "Oh, yes, really?!" or "Wow, that's really something." One day something came up about FIL, and we mentioned we missed him.  She looked shocked and said she didn't know he had passed.  wait, what?? We went with a quick distraction and she forgot about that incident just a few minutes later.

    Know that you are not alone. And do you have DPOA and HIPAA accesses in place? very important...

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more