New and looking for resources

Hi. I just joined this group today, I'm not sure if I'm the intended demographic as I'm not the primary caregiver for my loved ones with Alzheimer's and dementia but I have been struggling with the grief and looking for support. If anyone knows a better group please let me know! My grandfather has late stage Alzheimer's and has been in full time memory care for three-ish years. My grandmother (other side of the family) has been showing concerning signs of memory loss for a few years and has refused to seek any diagnosis or care. In the last year she seems to have been getting exponentially worse and my parents have been struggling to push to accept help/get diagnosed/etc. I have been feeling overwhelming grief like I have lost or am losing them even though they're both living, guilt over feeling like I should've spent more time with them, or done more to intervene and help, and a lot of other things. It is so hard to watch them slip away and I don't know how to process this type of ambiguous loss. If anyone has any advice or resources I would really appreciate it.
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  • Michele P
    Michele P Member Posts: 551
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    Welcome. You will not find a more knowledgeable or supportive group of people than the ones on this site. It is not uncommon for someone who has Alzheimer’s to not recognize that they have the disease or to refuse to seek medical treatment. Whoever has your grandmother’s Durable Power of Attorney is the one who can get your grandmother the help she needs. I would have that person keep a journal of all symptoms and behaviors that your grandmother is exhibiting. Call her primary care physician and discuss the problems. Set up an appointment as an annual exam with the intent to check cognitive function. The primary care physician should refer her to a neurologist and a neuropsychologist who will perform more in depth cognitive testing. A brain MRI and brain PET scan along with the blood test to diagnose Alzheimer’s should be ordered. I would recommend that you find a local therapist who has experience with dementia in families and set up an appointment to discuss what you are struggling with. Dementia impacts entire families. Best of luck to you and your family.

  • H1235
    H1235 Member Posts: 2,386
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    edited August 9

    Welcome. I will give you some resources that may be helpful. Does your grandfather have a DPOA in place? This is very important. If not, it might be best to approach this as simply something that should be done now that he is getting older. Try to convince a person with dementia they have symptoms is usually impossible. The same approach can be used to get him to the doctor. Tell him it’s a routine appointment to check——-. When it’s time for a care facility tell him he needs some extended pt or it’s a temporary thing while work is done on the house.

    https://www.nytimes.com/2025/10/17/well/anticipatory-grief.html

    https://iona.org/therapeutic-fibs-ok/

  • SamScar98
    SamScar98 Member Posts: 2
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    Thank you this is very helpful. Unfortunately there is no DPOA set up yet, that is something I have been talking to family members about trying to push for. The journal is an incredibly helpful idea, that might both be able to help her next of kin realize she needs a power of attorney to make decisions for her and to give to doctors when she finally sees one. I am going to be spending some extended time with her soon so while I am there I'll document everything.

  • Maru
    Maru Member Posts: 561
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    Your grief is valid. With dementia, it just goes on and on. In some ways being a caretaker makes it a little easier…We are hands on, we are slowly becoming more consumed with the care and responsibilities of caretaking. Sometimes we just have to bury our grief for the sake of the one we love. You are not a caretaker. You can only stand by and watch that grandparent you love. Giving support to your parents as they take on the role of caretakers may at least give you the knowledge that you are doing all that you can do. Don't let your grief keep you from loving your grandparents. Even when a POD can no longer speak or even understand what is said, they still respond to being loved. All our grandchildren love their grandfather. Your grief gives me an insight to how they are feeling. I am sorry that you are carrying this.

  • Michele P
    Michele P Member Posts: 551
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    The DPOA is extremely important along with signed HIPPA forms. You have got to have her sign legal documents while she is still capable of signing. If you wait, a family member will have to go to court to get assigned. You don’t want to have to go through this. It’s a nightmare! Videos are also helpful.

  • ARIL
    ARIL Member Posts: 567
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    You are very welcome here! Your love for your grandparents is palpable in your postings, and the folks who post here regularly are more than willing to help you think about and navigate this season of your life, and theirs. Most of the regular posters are direct caregivers, it’s true, but the site is for everybody, and people with different perspectives are very helpful. I have learned from you already!

    The DPOA is absolutely critical, and urgent. For health care and finances. (In some places these are on one form; in other places—such as the state where I was appointed DPOA—they are two different forms.) It is better to present this idea to the grandparents as “something that makes it possible for us to help you when you get to the point that you need more help” or “something we just need to take care of as all of us are getting older.” I successfully used the first option for my dad.

    As for the grief…yes, it is so hard, and it affects whole families and whole friendship groups. And please try to release regrets for the past. We can only go forward from here. You can still love your grandparents, even as you find new ways to show it. 💜

  • mkschwerha
    mkschwerha Member Posts: 5
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    Give Zinnia a look. It helped immensely with my LO:

    https://www.zinniatv.com/

  • Daisy4U
    Daisy4U Member Posts: 37
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    edited August 11

    @SamScar98, I truly feel for you. Anticipatory grief can be overwhelming. Protecting your heart as a caregiver so you can continue to support your LOs is so important. I commend your wanting to help as a grandchild. The following resource helped me walk through the emotions that threatened to swamp me at times. It's on Amazon or you can find it (and other resources for caregivers ) at the https://cosyseniorstories.com/the-sandwich-generation website.

    Wishing you and your parents strength for the journey.

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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