Have any questions about how to use the community? Check out the Help Discussion.

This disease has made it POSSIBLE to....

Chris20cm
Chris20cm Member Posts: 163
100 Care Reactions 100 Comments 100 Likes Second Anniversary
Member

There were so many great responses to the question about what the disease has made it impossible to do, I wonder how many important growth and learning opportunities we have experienced.

For example:

…become more accepting of things we can't change.

…Reexamine our faith and spirituality

….learn things about family relationships we weren't aware of.

Comments

  • Maru
    Maru Member Posts: 544
    500 Likes 500 Care Reactions 100 Insightfuls Reactions 100 Comments
    Member

    Interesting topic. In some ways, DH's ALZ has done something for/to me that I never thought possible…I have finally become patient and tolerate things that used to just drive me crazy. I used to ask God to give me patience, and although I had plenty of opportunities to practice it, I did not. First, I had to grit my teeth to be patient with DH, now, it is second nature.

    I didn't have to re-examine faith or spirituality, but I have certainly learned to lean in on God more for comfort, for wisdom.

    I have had to examine all my priorities, what is essential, what can wait, what can be dropped altogether

    I think that my being in the caretaker role has made me less selfish, less self-centered, a nicer person.

    I am sorry that it has taken ALZ to do this..

  • Damiross
    Damiross Member Posts: 77
    25 Insightfuls Reactions 25 Likes 25 Care Reactions 10 Comments
    Member

    I have much more patience now with my wife.

    Regarding family and friends relationships, I have learned that people do not want to be around a friend or family member.

    This is not by their words but by their actions. I can understand people wanting to remember a person as she/he was but this is selfish on their part. If a person is a loving family member or a true friend, then he/she will take the person with Alzheimer's/Dementia as the person is now, not as she/he was in the past.

    My wife is in a memory center that is 0.7 miles away. A 4-5 minute drive. Yet, no friends have visited her. In fact they hardly ever visited her when she was at home, even though they are only about 100 feet away (we live in an apartment building).

    What really upset me was the second time her son and daughter-in-law visited. They live an hour away. Though they didn't say it this way, the way I heard it was "we are going to be in the area for someone's graduation so we might as well visit mom, too."

  • Chris20cm
    Chris20cm Member Posts: 163
    100 Care Reactions 100 Comments 100 Likes Second Anniversary
    Member

    This is one of the more amazing and totally unexpected things about the caregiver experience, how family members respond. I try to remember they can only love and support us and our LOWD according to their own abilities, but it hurts nevertheless.

  • Chris20cm
    Chris20cm Member Posts: 163
    100 Care Reactions 100 Comments 100 Likes Second Anniversary
    Member

    That is good to hear. I feel much the same way but I do lose patience toward the end of the day sometimes. I am a work in progress but I have friends in high places too that remind me what's most important. Patience, acceptance, forgiveness, faith.

  • Bowerbird
    Bowerbird Member Posts: 97
    100 Care Reactions 25 Insightfuls Reactions 25 Likes 10 Comments
    Member

    I have learned to love my DH in ways I never could've imagined in our former life. The love I feel for him is a different sort of love, but so deep, it nearly bowls me over sometimes.

  • H1235
    H1235 Member Posts: 2,339
    1,000 Likes 1,000 Insightfuls Reactions 500 Care Reactions 1000 Comments
    Member

    My mom has dementia. My brother has always been kind of lazy and I knew going into this with mom not to expect much help, but believed him to be a good person. Is is not the person I had pied he was. What I learned (it took a while) is that some people just can’t be reasoned with and will do anything to get out of work and take responsibility, continually trying is pointless and not worth the energy and effort.

    There have been some times through all of this that I was so frustrated, on edge and filled with anxiety I couldn’t even think straight. I went through a drive through (probably shouldn’t have even been driving) for fast food during one of these occasions and heard a worker comment “she looks mad, would it kill her to smile”. I’m ashamed to admit I have been in a grocery store or out and about in the past and occasionally thought the same thing of other people. What I learned is, you never know what someone is going through. Not everyone is able to manage even a simple smile in passing.

    I have also learned there’s not always a “right” answer. I’m the kind of person that likes things black and white clear right and wrong. Dementia is messy! You just do the best you can and try not beat yourself up when you make mistakes.

  • easy23
    easy23 Member Posts: 443
    Sixth Anniversary 100 Insightfuls Reactions 100 Likes 100 Care Reactions
    Member

    So true. I am amazed by the number of family and friends that have nothing to give.

  • Sunfish47
    Sunfish47 Member Posts: 140
    100 Comments 100 Likes 100 Care Reactions 25 Insightfuls Reactions
    Member

    This disease has made it possible to - - - see what my husband must’ve been like when he was 3 or 4 years old.
    Just kidding 😂

    Seriously, yes, I’m learning patience, what marriage commitment really means, and to appreciate any little happy moments in life.

  • Dan520
    Dan520 Member Posts: 23
    10 Comments 25 Care Reactions 5 Insightfuls Reactions 5 Likes
    Member

    I am quite shocked by family and friends that tell my wife or to me about my wife "we have to get together " and it doesn't happen. I just try to tell myself that I don't exactly know what's going on in their world. Everything works out in the end.

  • Chris20cm
    Chris20cm Member Posts: 163
    100 Care Reactions 100 Comments 100 Likes Second Anniversary
    Member

    Yes! I get that!😊. That's why they used to call it "second childhood."

  • Damiross
    Damiross Member Posts: 77
    25 Insightfuls Reactions 25 Likes 25 Care Reactions 10 Comments
    Member

    My mom says he did not have Dementia or Alzheimer's when she was growing up.They called it a second childhood which I think is extremely appropriate.

  • harshedbuzz
    harshedbuzz Member Posts: 6,936
    Ninth Anniversary 1,500 Insightfuls Reactions 1,500 Likes 5000 Comments
    Member

    TBH, I put down any personal growth in patience, empathy and mad advocacy skills to parenting a child with special needs. I didn't need dad to be a better person.

    Cobbling off what @Sunfish47 said, dad's dementia did give me a chance to see dad's personality before the onset of his mental health issues. Dad and I never had an easy relationship, so I was always suspicious of his doting old aunties who described him as the sweetest child they'd ever known. But sometime in late stage 6 a month or so before he died, his whole personality changed. He was conversational (albeit his own version of reality) until the end and the visits in those few weeks were some of the best times we ever spent together.

  • SusanB-dil
    SusanB-dil Member Posts: 967
    Fifth Anniversary 1000 Comments 250 Likes 100 Insightfuls Reactions
    Member

    Can definitely see where HB is coming from… although flipped a bit.

    I got to see a side of mother that others would tell me about. When she thought I was her sister, she was nicer to me and her attitude toward 'her sister' was way different than what I was accustomed to.

    So yeah, that was different. I got to experience her nice side. Unfortunately, now she doesn't know anyone.

  • dancsfo
    dancsfo Member Posts: 386
    100 Likes Third Anniversary 100 Comments 25 Care Reactions
    Member
    edited June 10

    I learned that many things in life are actually quite minor and not worth spending time and effort worrying about. One ought to focus on important that really matter. The minor things can range from some material possessions, maintaining appearances, etc. It does depend on the person, of course.

    You can argue that it's also a form of "letting yourself go" regarding health and appearances and not caring about a lot of things. One can also claim that these small things can be stress relief and diversions for the caregiver.

    But I also feel that in pre-dementia life, one can be too particular about things that don't matter on the long-term.

  • ARIL
    ARIL Member Posts: 559
    500 Comments 250 Likes 100 Care Reactions 100 Insightfuls Reactions
    Member

    My first reaction is to produce a list of negative statements…but I’ll try the other route first:

    This disease has made it possible to learn to range across time within a very few minutes: to be in the 1940s one minute, the 2010s the next, then back to the 1970s. To talk about beloved family, long dead, as if we might see them tomorrow. To see who it is in his life my dad loved most, felt most safe with, wants to see again… To review my family history not through dates and events as much as through feelings.

  • Call me Gram
    Call me Gram Member Posts: 181
    100 Insightfuls Reactions 100 Comments 100 Care Reactions 100 Likes
    Member

    This disease has made it POSSIBLE to...

    • learn how to fix a faucet or a light fixture (etc) myself.
    • forgive and forget past hurts without receiving an apology.
    • feel tenderness and see the humor in things I used to resent.
    • ask for help when I need it.
    • feel gratitude for my own abilities.
    • find solutions to issues I never imagined I would face.
    • have greater empathy for others - knowing that everyone faces something difficult (whether we know about it or not).
    • identify our real friends.
    • find an online community I can turn to and feel accepted and understood.

    Thank you all!

  • JDancer
    JDancer Member Posts: 613
    Sixth Anniversary 250 Care Reactions 250 Likes 500 Comments
    Member

    stop sweating the small stuff, because I'm overwhelmed by the big shit

  • rmoore512
    rmoore512 Member Posts: 3
    5 Likes 5 Care Reactions First Comment First Anniversary
    Member

    I have a family member that can't seem to find time to visit my DW. I know dementia is ugly and hard to see, but as a husband and a caregiver, I have to look at it every day, all day. People that choose not to visit because it's not convenient, or "they want to remember her like she used to be", ultimately miss out on a blessing by not visiting their family member. And they inadvertently hold back a blessing from the caregiver. Visits to a dementia patient can be a source of encouragement to the caregiver. Blessings to you and your wife.

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