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Two weeks in

linda3517
linda3517 Unconfirmed, Member Posts: 1
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My husband was diagnosed with dementia two weeks ago. He is on anti-seizure medication. The insurance continues to deny the doctor's request for a special Pet Scan. I am just beginning and with his denial that he has dementia and the problems with the insurance company, I don't know if I can do this. I have stage 4 cancer that has spread to the bones and so I am dealing with my own health issues. But when I read other people's post that have been a caregiver for a time, they all sound like they can't cope.

My husband and I have been married for 52 years and I love him dearly but I am afraid of this journey.

Linda

Comments

  • l7pla1w2
    l7pla1w2 Member Posts: 329
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    I am so sorry you're dealing with a double whammy. You have found an excellent discussion group for suggestions, advice, and just plain support. Feel free to vent at any time.

    I can't offer any specific advice about cancer. However, people here will routinely say you've got to take care of yourself or you're of no help to your LO.

    Concerning dementia: The PET scan is probably to try to determine what kind of dementia your husband has. For some types, there are specific drugs that can help control particular (undesired) behaviors. I don't know why the insurance company denied the doctor's request. Maybe you can ask them. In the end, though, we all just try to support our LO through the various stages of the disease as well as we can, knowing there's no cure.

    It is common for PWD to have anosognosia, which manifests as denial, but is actually a condition where the patient truly doesn't perceive they have a problem. The difference is subtle and may be one of the first challenges caregivers face. It is futile to try to reason with them. As we say, their reasoner is broken. You will need to develop strategies to work around the condition. In my case, I knew my DW would challenge any attempt I might undertake to get help: "Why do you need help? There's nothing wrong with me." This discussion group was the one place where I could get support without being challenged.

    There are times when we all asks ourselves whether we can do this, take care of our LO, but somehow most of us do. That doesn't mean it's easy.

    I'm sure others with chime in with suggestions for someone just starting down this road. You may find the New Caregivers Discussion Group (<https://alzconnected.org/group/32-new-caregiver-help>) to be helpful. People often recommend the book, "The 36-Hour Day."

    Come back here often.

  • Carl46
    Carl46 Member Posts: 1,141
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    Linda, I am so sorry, both for the cancer and for your husband's dementia. I have had cancer and I cared for a wife with dementia, but I didn't do both at the same time.

    I think you will need help to care for your husband. The stress of caring for my wife, late in dementia, adversely affected my health, and I think it may adversely impact your cancer survival as well. It is not too soon to see a CELA to discuss your situation and learn how to arrange your finances so you can both receive the care you need.

    Best wishes for you.

  • Timmyd
    Timmyd Member Posts: 176
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    Member

    In my experience, insurance coverage for PET scans following a dementia diagnosis are all over the place. Some are approved, others denied, others denied then approved….

  • Karen711
    Karen711 Member Posts: 166
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    Member

    Dear Linda-

    I’m sorry to hear of your Stage 4 cancer and your husbands diagnosis of dementia!!!
    I agree it sounds as though he’s also suffering from anosognosia which may make things harder on you to find solutions. Being a caregiver will definitely put a strain on your health and so it seems you could both use a lot of outside help coming in, or one or both of you move to assisted living/memory care (continuum of care facility). Consulting a CELA is very important. I just don’t see how you can take care of your self and him at the same time and under the same roof. I hope you have family and friends that are there to help navigate this. As hard as it is, the best thing you can do for him to to take care of your self. It’s great you have found this group. Everyone here understands what you’re facing. You will find a lot of love and support here. Keep us posted!

    Sending you a hug and Love,

    Karen

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
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