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Just diagnosed

I’m scared. Every time I think about it. My mom had dementia and later it turned into Alzheimer’s. Her last 3 years of life was the worse way of living. She cried. Her tears ran down her face but we never heard what was in her mind, even though we all knew she was going through torture. I hate myself for always having excuses to not go take care of her when my sister asked me for the favor, she was the one that took care of my mother. I don’t have peace in my heart. Especially now that I have it. I wonder, no one has the time to take care of me when I can’t do anything for myself. My daughters work full time, even double shifts to make enough to take care of my grandchildren. I’m so worried? Help!

Comments

  • GEH
    GEH Member Posts: 143
    100 Comments 25 Care Reactions 25 Likes Second Anniversary
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    An Alzheimer's diagnosis today is not how it was when my mother was diagnosed many many years ago. There were basically no treatments, therapies etc. Today it is TOTALLY different. There are meds for symptoms ie memantine, etc intervention type treatments like Leqembi and Kusunla in addition to all kinds of social support groups and agencies. I am 68 and was diagnosed maybe like 4-5 years ago and I feel more cognitively alert and confident then I did then. Yes! It is a scary diagnosis but not as it was say just 10 years ago. Please find yourself a great neurologist that specializes in Alzheimer's and related diseases. They will help guide you thru your journey. I am glad you found this website. Please feel free to share with us regularly on how you are doing and if you have questions. I have found this group has a wealth of knowledge. We have all been thru what you are going thru and are here for you. Just reach out. Big hugs to you.

  • rmisheloff
    rmisheloff Member Posts: 10
    10 Comments First Anniversary
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  • JPJardinel
    JPJardinel Member Posts: 67
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    The fear of going through what your mother went through is completely understandable but dementia care has changed significantly even in the last decade and there are more support systems, resources, and early intervention options available now than there were for her. Your daughters love you and people have a remarkable way of finding solutions when someone they love truly needs them, even when it feels impossible from where you are standing right now. You are not your mother's story and you do not have to carry this fear alone.

    I got some of my references here:

    https://hopebridge.care/yakima-families-searching-for-compassionate-dementia-care/

    https://en.wikipedia.org/wiki/Dementia_caregiving

    https://nurseslabs.com/dementia/

  • eaglemom
    eaglemom Member Posts: 1,180
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    I think those are very natural reactions. Have you looked into an ALZ support group? There you would get the support you need and be with others who understand exactly how you are feeling. Try looking up ALZ Assoc or call the ALZ Helpline at 1-800-272-3900. They might be able to point you in the correct direction.

    eagle

  • Dorse
    Dorse Member Posts: 94
    25 Care Reactions 10 Comments First Anniversary 5 Likes
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    I tried Aricept, couldn't take it. I was close to starting the Lilly's infusions until I realized that I would be paying a large amount of money even after the insurance. Well, that turned out to be a blessing as it's a year later, and I too am doing fine. I am curious about the ones who are getting the infusions & say they have no progression after a year, neither do I without the infusions or aricept, therefore, how do they know. I know Ely Lilly's must be making some big money off all of this. Yes, they have invested alot, but pharmaceutical companies know what they are doing. God bless everyone who have gone through the trauma / shock of hearing this diagnosis.

  • GEH
    GEH Member Posts: 143
    100 Comments 25 Care Reactions 25 Likes Second Anniversary
    Member

    Hi Dorse

    I hope you are doing well.

    Regarding infusions. I am on Leqembi infusion and you are right, the are very expensive!! Mine were going to be over $400 for each, and i could not possibly afford that.

    However my Dr. coordinated with and entity called EVICORE. Here is their web address

    https://www.evicore.com/

    They have programs that pay other entire cost of every infusion but I believe that your Dr. needs to initiate contact. I am going for my 17th infusion and have not paid a dime. I would encourage you to chat with your Dr. as soon as possible to get ball rolling I am pretty sure I did not have to do any paperwork, it was all done by my physicians office. Please feel free to reach out if there are questions.

    GE

  • Dorse
    Dorse Member Posts: 94
    25 Care Reactions 10 Comments First Anniversary 5 Likes
    Member

    Thank you GEH, I am doing well at this time, therefore, I think I will just hope / pray that I can continue on this path.

  • Nancyre
    Nancyre Member Posts: 4
    5 Likes First Comment
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    Hi..My name is Nancy. I am 76 and recently diagnosed with early onset Alzheimers and I have began infusions.
    I would like to start a support group of people that would like to talk about our lives living with early onset alzheimers. How people may look at us, their reactions and how remarks made regarding our diagnosis could affect us. And any other things that effect our lives. I feel that we need to bring this diease out of the darkness. The diease can be found in a blood test. Lets help each other and help educate friends and family.
    Does anyone else have interest in this?
    Thank you
  • PamSH
    PamSH Member Posts: 4
    First Comment
    Member
    Yes, I was thinking about starting a group myself but haven't found how to do it yet. I also recently found out that I have Alzheimer's. I am 73.

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