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Helping My Mother Understand

  • My mom was deemed "mentally incompetent" following her stroke. There are a million things that highlight this, like today, when her arm slipped under her seat belt strap and she couldn't figure out how to remove it.

     

    Or, like the fact that she swears people are stealing stuff from her room, but when I look for it, it's right where it's supposed to be.

     

    And, like the times when she lived with me and she'd wake up and insist that I moved all the furniture in her bedroom while she was sleeping. 

     

    And, when she'd wake up at 3am and insist that we slept in and demand her breakfast. I could show her that the moon was still up and she wouldn't accept it. I must have done something to make it dark outside.

     

    And, how she was offered free equine therapy, but refused to take it because they wanted her to start out in a cart and not on horseback because she couldn't sit up straight or sit up for more than 30 seconds without drifting to one side or the other. "They don't know what they're talking about," she said. "I may not be able to sit up in a chair, but I'm not going to fall off a horse."

     

    Despite all this, my mom doesn't realize she has limitations. Most of the time, I just bite my tongue, but the doctors all say she needs to accept her reality and learn to adapt to her new lifestyle. 

     

    These things aren't so bad, but my mom also refuses most forms of occupational therapy because she says none of it will matter when all her physical abilities go back to normal. 

     

    And, my mom keeps talking about how she is going to live on her own.

     

    And, my mom says she's going to get a dog and a house. 

     

    She's going to live with so-and-so (The name changes a lot, but it's often another family member or an old friend) until she's back on her feet. She doesn't mind sleeping on the sofa. 

     

    We have been through this 1,000 times. "Mom, who will dress you? Who will change you? Who will bathe you?"

    "So-and-so will." 

    "Mom, that's a big job."

    "Ok, I'll do it myself."

    "Why don't you do it yourself now?"

    "Oh, you just know everything, don't you?"

     

    Most of the time, it isn't so bad, but she gets combative and blames me for holding her back a lot. Today, my mom said she's getting a job. She's going to save up and move to another state where she will live with so-and-so (a woman who opened up a donation account in my mother's name a while back and then kept the funds for herself). 

     

    "Mom, you need a guardian. The court won't let you be without one and I can't be an effective guardian if you're out of state."

    "I have a plan. I have a checklist. I'm going to complete it and then I won't need a guardian anymore and then I'm going to go."

    "Ok, mom."

Comments

25 comments

  • OldSchoolTheSKOSlives
    OldSchoolTheSKOSlives
    You have my sympathies. My mother is 84 and has moderate dementia due to Alzheimer's disease. She is not as physically limited as your mother, but the paranoia and denial of reality are familiar (and common in elderly with cognitive decline). Unfortunately, while the human brain has some redundancy and compensatory ability, there are limits. Moreover, the brain is modular, so if enough damage occurs to certain regions, there's simply no replacing the lost functions. Two key areas affected by dementia are the hippocampus (responsible for the encoding of new memories) and the prefontal cortext (responsible for judgement and checking one's thoughts against empirical reality). Hence, people (most commonly elderly) with dementia or similar cognitive impairment live in a curious world consisting of a mixture of the eternal present (because recent memories have not encoded) and the distant past (because memory recall is independent of memory encoding). It's also a world where our all-too-human tendency to need an emotionally satisfying explanation/narrative for our beliefs overrides our Reality Checker. Hence, it seems perfectly reasonable that one's daughter must somehow have made it darkest night at 11 a.m. I wish you luck and hope your patience holds out. My mother has severely tested (and sometimes exhausted) mine and that of my siblings. But little can be done except to endure it.
    July 15, 2016

  • Carazaa
    Carazaa
    I am so sorry that you have a very ill Mom. It must be totally overwhelming. I can't even imagine that on a daily basis. Wow, your Mom is very blessed to have a daughter like you! I hope you have a great support system. I would encourage you to get disability respite for her a few hours. every week, get a caretaker for her if you can, have a support group for yourself with other family members who are caretakers and/or have a family member who has serious illness (maybe through NAMI), and have your own support system with friends and social activities, and don't forget to take really good care of yourself (sleep and good nutrition)
    July 15, 2016

  • OldSchoolTheSKOSlives
    OldSchoolTheSKOSlives
    I'd like to offer two pieces of practical advice to anyone reading this who may be facing situations like this in the future. 1) Talk to your parents about their wishes BEFORE they lose their faculties -- You need to have a set of converstaions (or, better yet, something in writing) to reference once the weirdness is in full bloom. Otherwise, the elderly person will make it up as they go along (see JA's description of her mother's "plans"). Once the crazy starts, it becomes a near-constant battle to get the person do to what's reasonable and prudent, instead of what they want in the moment. 2) Especially talk about Powers of Attorney with respect to financial decisions and medical care. Once the crazy starts, it will be immensly difficult to get the impaired person to agree to let others handle his/her affairs. Between the increasing paranoia (exemplified by the "If I can't find something, someone MUST have stolen it" narrative) and the combination of ego/lack of recent memory ("Of course I can still handle my finances. I've been doing it for 50 years!"), the impaired person will insist they are still capable, even if he/she can't get through mailing a check to pay a bill. Good luck to everyone facing this situation, either in the present or in the future.
    July 15, 2016

  • Sharonna's PREZ is ODIOUS
    Sharonna's PREZ is ODIOUS
    This situation is very familiar with me.   I was the sole caregiver for my mom and no one believed me for years that this was happening to her.   She would call my brother and he would sympathize with her and her delusions because he was drinking and as deluded as she was.   It was so hard,  I am still recovering from this after she passed away.   Her decisions at the end of her life almost ruined mine.  I cannot believe I am sane after that.   The worst part is the destruction of our relationship.   It withered so badly due to her belief that I was this horrible daughter, that it was hard to reach her and have her remember I was never the enemy for one second.    Sigh.
    July 15, 2016

  • LinedWithLead
    LinedWithLead
    Like most of the others who have commented, I too have an 84 year old mother who is moderate stage ALZ. It really is a cruel and stress-filled process to live through, and there's a lot of good help suggested in the other comments.  I would reiterate and stress that you need support from others if possible...siblings, if you have any, need to have it clearly explained that this is their burden, too and now is the time to step in with substantive support, not just well-wishing. Insist on it and don't allow the weight of the struggle grind you into sickness or broken relationships with spouse or children. I don't know if it will help anyone else, but it has helped me to remember that I was irrational, irresponsible, prone to self-delusion and made a lot of really really stupid statements and choices when I was growing up. And through it all, mom stood her ground and let me know she wasn't going anywhere, no matter what I did or said or thought about her. She cleaned many dirty diapers, and also scrubbed her carpet after my night of too much Tequila. (yes, I moved out the next day.) And I haven't even mentioned the nights sitting up when I had every childhood malady possible. Sadly, this too shall pass, and then the reality of "a bitter sweet goodbye" will gain a profound new significance.  Love conquers all.
    July 16, 2016

  • Just Asking
    Just Asking
    Thank you for all your thoughtful responses. @OS-  I do try to take that into account when dealing with my mom. I can only imagine what it's like to be stuck in a world that you know isn't quite right, but can't figure out why. Your advice is fantastic. The discussions you recommend that people have are essential, but so few have them in advance. In my mom's case, she was only 55, so the earlier people have these discussions, the better. As you said, once the "crazy" starts, there's little one can do but ride with it and try to balance the person's wishes with their desires, and it's not always easy to make the right decision. Best of luck to you and yours. @stiltcourt- I'm sorry you had to go through all that. I think that the unhappiness that gets directed at us is more just the person wanting to feel in control over their own environment. So little is in their control at that stage. @Carazaa- Thank you. My mom no longer lives with me, so I don't handle her daily care. She wanted to feel more independent by living in an assisted living facility, but I still manage her affairs and keep up with her medical appointments and such. You are right, though. Caregivers need a lot of support. It's very hard to keep up with the needs of someone else alone. @Nicko- Thank you for sharing. It seems like this is a very commonplace situation, but few talk about it.  @NotHarryPotter: :) @Sharonna- I'm sorry you had to go through that. The stuff that's been going on with my mom totally divided me and my brothers as well. I had one brother back in our home state that had been doing what he could for her while she was in a nursing home there and another one here locally. The distant one understood it, and when I'd call him and say, "This is what's happening and this is what I feel I need to do," he'd support it or offer reasonable advice. My local brother refused to help at all with her, but he sympathized and enabled, to the point where I finally told him that if he was going to make it harder for me to care for her, he needed to provide the care. It wasn't long after that (we're talking weeks) where he realized what I was dealing with. I ended up taking everything back over again, but the damage was done to the relationship. He and I often act like divorced parents with our mom. We communicate cordially when it's necessary for the sake of sharing information or making sure her needs are met, but we no longer have any kind of a sibling relationship. It's sad, but there's really nothing that can be done and I'm glad that we're not fighting, at the very least. @LinedWithLead- Thank you for sharing. It seems a lot of us are going through the same issues. I find it odd that most people never talk about it or the strain that it puts on families. I talked about familial relationships in my comment to Sharonna- my siblings and I are at odds over it. I probably would have divorced even if my mom didn't have the stroke, but it surely hastened the ending. There's only so much one person can tend to alone. I'm lucky in that my mom is generally happier in assisted living, so I don't have to worry about physical daily care anymore. It's easier to compartmentalize when I don't have those 3am wakeups and 24/7 care anymore. At any rate, best of luck to you and yours. I hope that you have a team helping you as well.
    July 16, 2016 - 1 likes this

  • Chirpychick
    Chirpychick
    Try to have some sanity in your life, when you can do simple things that give you pleasure and nature you. Take care and look after your mind and body. Peace
    July 16, 2016 - 1 likes this

  • Zenobia
    Zenobia
    Even though your blog was posted back in July and I'm only just reading it now, I feel for you. Probably your Mom's dementia has progressed since then. New layers of loss keep happening both for you and for her.
    I looked after my Mum 24/7 in her last 18 months. Dementia is incredibly hard to deal with - especially adjusting to each new level as it progresses and learning how best to communicate and cope.
    Then on top of that, raising kids and trying to build this site - can't imagine how you do it. My admiration for you is huge.

    September 29, 2016 - 1 likes this

  • Sharonna's PREZ is ODIOUS
    Sharonna's PREZ is ODIOUS Chirpychick
    It says reply-like and nothing seems to happen.

    I am replying JA and I am liking.  Thank you for your personal answer to each of us.  

    September 29, 2016

  • Just Asking
    Just Asking Sharonna's PREZ is ODIOUS
    The blogs section is a little nutty right now. It posts the reply, but you can't see it if you're looking at a single answer/ comment.
    September 30, 2016

  • Just Asking
    Just Asking Zenobia
    Thank you. My mom actually had a stoke, so the damage was done then and there. It's not progressive. That's a blessing because she's not even 60 yet, but she has several decades of this ahead of her.

    I'm sorry you went through that with your mom. It's good that she had someone so compassionate with her. No doubt, it was probably one of the most difficult things you'll ever do, but she was lucky to have you.

    September 29, 2016

  • Bozette
    Bozette
    Caring for a family member like that is heartwrenching in and of itself, but made even moreso when other family members do not realize just how much it takes out of you and how it impacts pretty much every aspect of your life.

    My brother was in his thirties when he was in an accident and suffered a closed-head injury as well as severe physical injuries.  I was appointed his guardian, and it was often a battle with him because he always thought he could do things he couldn't, would refuse to do things he needed to do, and would sometimes get fixated on ideas that were impossible.  He fought me every step of the way the first few years and accused me of stealing from him, when in reality my folks and I were paying all of his bills at the time, it took eight years of battling with SSA to finally get him disability.  

    After eleven years, he still needed me, but finally seemed somewhat more settled and I didn't have to deal with him every day anymore.  Just when it seemed I would get a breather, my husband had a DVT and multiple pulmonary embolisms, as well as suffering mini-strokes.  Always a proud and independent man, he did not want to admit he couldn't do things or that he needed help.  He began having others problems for which we never discovered the cause.  Over the last year and a half, he was able to do less and less, lost the ability to walk and was losing the use of his arms and hands towards the end.  He was in his early forties.

    It is a good idea to discuss the wishes of parents and family before things happen, but we normally do not expect such things to happen to people in their 30s, 40s or 50s.  My heart goes out to you.   

    September 29, 2016 - 1 likes this

  • Just Asking
    Just Asking Bozette
    Wow. You've been through this twice. You are a trooper.

    You are right. People should plan for the unexpected here and have something in mind for the what-ifs of life. A lot of us coast by, expecting nothing will ever happen to us or hoping we'll get to it before something happens, but it really puts a strain on families. 

    Families are often totally divided on these things, which is another issue as well and man, it is emotionally difficult to keep up with it when the person you're caring for treats you poorly because they're locked into the mindset that you're doing them wrong. You can tell yourself all day long that it's their TBI talking, not them, but they're still your mom, brother,  husband, wife, etc. and it still hurts.

    September 30, 2016 - 1 likes this

  • OldSchoolTheSKOSlives
    OldSchoolTheSKOSlives Just Asking
    Re:"You can tell yourself all day long that it's their TBI talking, not them, but they're still your mom, brother,  husband, wife, etc. and it still hurts."

    That has been one of the two hardest lessons of my experience. It took me years to let go of the vitriol my mother spews, and I still occassionally slip up and let it get to me. And some days I still harbor the fantasy of telling my Mom what I ***really*** think of her
    and the way she behaves. But it's pointless, and I've (mostly) learned to let it go.

    The second very tough lesson is you cannot care for an injured/elderly/demented with much investment in the outcome. You can
    do your damdest to make sure the best possible PROCESS for treating them is followed, but the results of that treatment will be
    semi-random. My sister is having a tougher time with this lesson. She wants to try umpteen zillion things in the hopes that she'll
    hit upon the magic combination that makes Mom compliant and/or appreciative, and it just doesn't matter. One has to learn to appreciate
    achieving the minimal acceptable outcome and not get emotionally invested in doing better. Better or worse will happen due to factors
    which cannot be controlled (or, often, even anticipated).

    September 30, 2016 - 1 likes this

  • Just Asking
    Just Asking OldSchoolTheSKOSlives
    That's the sad truth. You really have to learn to let go of a whole lot when someone you care about is in decline. You can't "fix" things and make them ideal- there isn't a "right" anymore, but for your own mental health, you have to accept that you did the best you could by them.
    September 30, 2016

  • Bozette
    Bozette Just Asking
    It does still hurt.  Both them lashing out at you and your empathy for the confused state they find themselves in.  I recall times when I had to go here or there and the drive time was my one real alone time, I cannot tell you how many times the tears just quietly flowed as I drove along.  

    Tomorrow is my husband's birthday, and after a year and a half I just got the autopsy results on my brother...and I am missing them terribly.  So happening across your blog now is somewhat fitting.  A friend asked me yesterday, "But you'd do it all again if you had to, wouldn't you?"  And I would, as difficult as it can be, and as difficult as they can be...I knew that somewhere amid the confusion, they recognized and appreciated me and what I did.  That may only come in brief moments of clarity, and it is difficult for them to express, but I truly believe it to be true.  

    Hang in there, JA.  :) 

    September 30, 2016 - 1 likes this

  • Just Asking
    Just Asking Bozette
    I have no words, but I'm sending you a silent internet hug. *hugs*
    September 30, 2016 - 1 likes this

  • Bozette
    Bozette Just Asking
    Backatcha.  (((Hugs)))
    September 30, 2016 - 1 likes this

  • OldSchoolTheSKOSlives

  • Bozette
    Bozette OldSchoolTheSKOSlives
    Thank you.
    September 30, 2016

  • SA (SuperA)
    SA (SuperA)
    Karen, The loss of what 'once was' is what your mom is hard to accept or unable to accept. My son was hit by an SUV over ten years ago, left in a coma or about a month. When he came out of his coma he couldn't remember the accident nor the reason he was on IV's and in the hosital.

    After many tests on him, because he had become delusional, it was found out he was schizo-affective: borderline bi-polar and schizophrenic.  He became worse and now has been diagnosed as full fledged schizoprenic.

    He is now homeless because he does not believe at times he has parents. It breaks my heart when he doesn't accept that I am his mother.  It is not his fault, because his brain was so damaged he CAN'T remember certain things or people.

    We also ook care of my father over 30 years ago after his heart attack at the age of 91.  We had help from all the family so it wasn't as hard as it could have been. Through it all, I have learned many great lessons through the hardships.  We can only do 'so much' for our families, but our families cannot be replaced so it is important to just be there if needed.
    My best to you.  SA

    October 1, 2016 - 1 likes this

  • Just Asking
    Just Asking SA (SuperA)
    Psst... this was my post (JA). I appreciate the sentiments you shared though.
    October 1, 2016

  • SA (SuperA)
    SA (SuperA) Just Asking
    Pssstt...sorry about that.  I was talking to my cousin and typing at the same time. Dang....I wonder if I called her JA and that's why she was upset with me....lol

    October 1, 2016 - 1 likes this

  • Just Asking
    Just Asking SA (SuperA)
    Oops. You're officially an addict. ;)
    October 1, 2016 - 1 likes this

  • PeaPod
    PeaPod
    My heart goes out to you.  I took care of my mother before she got too ill to be at home and died.  She would not listen to anyone that was trying to help her out over the years.  She refused to go to a doctor, even though she was going blind and couldn't breathe.  Other than one hospital stay 10 years ago, my mom hadn't seen a doctor in over 40 years!  

    One day last March, she was suddenly delirious and very weak.  She no longer could call the shots so to speak and I called and ambulance.  Even in her delirium, she fought everyone trying to help her.  She went to a hospital and it was discovered she had cancer in both lungs.  Like your mother, mine also thought she was just going to go back home after some time in recovery and do things her way!  It turns out the slow blindness that was taking over was treatable cataracts, but she wouldn't let us take her to an eye doctor all those years she was having symptoms.  The cataracts got diagnosed while she was in the hospital while getting diagnosed with lung cancer.  Suddenly she realized she didn't want to be blind and finally agreed to get her eyes "fixed".  Being blind and being so helpless in a hospital wasn't so appealing.  

    She missed her chance to get her vision back.  She had a sudden cardiac event and died.

    I suppose I am grateful that she didn't suffer any more with the cancer that was found in both lungs.  But I look back and feel a sense of sadness that so much of her suffering could have been avoided.

    Caring for any family member stricken with a serious illness is such a helpless feeling, especially if they have an iron will to begin with.

    I hope you have some people you can turn to for some emotional support.  It can be one of the biggest challenges in life.

    October 10, 2016