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New to this site & in distress

rony lee
rony lee Member Posts: 8
5 Care Reactions First Comment
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in Caring For a Spouse or Partner

My DW of 55 years was diagnosed with AZ, VD, LB in December of 2025. She has a wide range of health issues, which I have helped her handle for our entire marriage, The latest issue that I have struggled to deal with is her diabetic control. She has been a diabetic since she was 12YO. She has had an insulin pump for nearly 15 years, she had the Dexcom G7 sensor transmitter for 10 years. Over the last three days I have had to insert a new insulin infusion site and a new sensor. She is extremely sensitive to the pain associated with the placement of these items. She currently does not recognize me as her husband and has become very hostile to me. She forced me out of bed last night. I did get to bed at 2:00, but upon awakening, she still has been hostile to me. She is blind, so I can not venture far from her to keep her safe. She tore some scabs off last night and she did allow me to put bandages on the sores. We have 2 children within 2 hours of our home, but she gets very agitated when I mention them and accuses me of not being their father. This is my first time on this site and I needed to get my feelings expressed. Thanks for listening.

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  • harshedbuzz
    harshedbuzz Member Posts: 6,954
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    @rony lee

    Hi and welcome. I am sorry for your reason to be here but pleased you found us.

    Dementia caregiving is always challenging but your situation seems extremely so.

    Specific to the infusion and sensor changes, I wonder if using a numbing cream like Emla topically would make the procedure easier for both of you. Would her doctor prescribe it?

    I have friends who always used it for their sensory avoidant kids on spectrum. They apply the cream and cover it with an occlusive bandage an hour before shots or blood draws.

    HB

  • jgreen
    jgreen Member Posts: 520
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    Dear @rony lee

    Welcome. Ahead you found us and posted; sorry you have to be here.

    It sounds like you have your hands more than full and need some immediate help. I would recommend you contact your Agency for Elder Care or another such program. (In fact, I finally took the next step and contacted mine today. Not good at asking for help) I learned there is a wait list after I complete a phone assessment with them next week. From the brochure I was given they have a list of resources in my area that covers in-home care or placement in a facility, legal help, meals, and Medicaid applications. I would certainly contact them and let them know your situation. They should be able to direct you to some organizations that can give you some much needed support.

    See what your 2 kids can do to help you. It might be they alternate a weekend visit with you and your DW so you can get some rest or take care of other business. They could also do some research for you on memory care, skilled nursing or assisted living facilities to help you narrow down some choices to visit as your ‘Plan B’.

    God bless you for hanging in there! Stay in touch and let us know how you are doing. Take care.

  • rony lee
    rony lee Member Posts: 8
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    https://alzconnected.org/discussion/comment/274059#Comment_274059

    Thank you for some suggestions on places to search into for assistance.

  • rony lee
    rony lee Member Posts: 8
    5 Care Reactions First Comment
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    Thank you for the information on the emla cream, I will check with her Doctors on its use.

  • rony lee
    rony lee Member Posts: 8
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    I have heard people discuss the stage the LO is experiencing. I have no information on stages. I feel that my DW has jumped into a stage beyond what to expect in 6 months. I am looking for all the information that I can consume.

  • jgreen
    jgreen Member Posts: 520
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    Dear @rony lee

    Here is an assessment tool for you. It comes from Tam Cummings’ website. She is a wealth of information.

    Dementia Behavioral Assessment.pdf

    If your DW has one behavior in the highest stage, that is considered her stage.

    Other health professionals our group found helpful are: Natalie Edmonds, Teepa Snow, and Camille Sinclaire. All have their own websites and YouTube channels. They have been laid out in plain language and I learned a lot from them. Also the book the 36-Hour Day is a good resource. You might let your two kids know about these resources. Understand and give them some grace if they don’t want to learn about this terrible disease. My son was in denial and quite hesitant for some time. He is now my rock and support system!

    Get hold of an Elder Care Attorney as soon as you can, or see if the Agency on Aging has advice in this regard. You and your DW need to get your legal affairs in order and you need to see that your assets are protected. This is an expensive journey!

  • rony lee
    rony lee Member Posts: 8
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    Thanks for the information on the stages! A quick glance identified some items from stage 3 were present before a diagnosis. Hallucinations, bugs, me having sex with others, all began immediately after a colonoscopy which went bad a caused a severe bleed. after the repair it took 5 units of blood to get an acceptable blood pressure. I feel this brought on VD even before we had a diagnosis.

  • rony lee
    rony lee Member Posts: 8
    5 Care Reactions First Comment
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    Our 2 kids were right on the spot in getting an elder attorney. We have established new POA, Living wills, irrevocable trust. We know this could become costly as it progresses. I really do not want her in a memory care facility with all of her medical issues. (blind, diabetic, transplant patient, heart bypasses, pancreas removed). MC will be a last resort, because of our years together. My daughter gave me a couple of books to read after the diagnosis relating to a program called DAWN (Dementia Alzheimer's Wellbeing Network) by Judy Cornish. it helped me prepare for my task as a caregiver, but the rapid progression is giving me stress.

  • BPS
    BPS Member Posts: 546
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    You might talk to her doctor because there are medications that can help with anxiety and delusions so she will be more relaxed and not as upset.

  • rony lee
    rony lee Member Posts: 8
    5 Care Reactions First Comment
    Member

    Her doctor put her on Quetiapine (Seroquel) She has increased the dosage and it seemed to help until the last couple of days. Right now it is a major confrontation to get her to take any pills this evening. My kids are pushing me to get extra respite care. I currently have 1 aid one day a week for 4 hours.

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

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