Early Stages

Jami Boyle

Hello to anyone reading. I’m in the process of coming to terms with the reality that my husband has some serious memory loss. EH has Lyme Disease but his connection with this illness as the reason behind his memory loss ignores the fact that his younger (73 yrs) brother is diagnosed with AD and now living in a group home after living with us for nearly two years. EH is 79. I’m 65. I’m so scared and agitated and I can’t talk with him about it without a fight or his serious decline into some juvenile state. Honestly, I feel like I’ll burst at the emotional seems of my being. I’ve read that the important stage for me is to work on accepting the reality of this progressive disease FIRST by getting a handle on my mood, my emotions, especially because my feeling are so ambivalent. I’m scared but I’m angry. I’m repulsed but I’m desperately clinging. I want to run away but I won’t. My sister in law did. Now I’m caring for my brother in law while grieving the handwriting on the wall about my own EH. God help me. Jami

Jeanne C.

Hi Jami - welcome. It's a great place for advice or just to vent. The members of this group have been a lifeline for me. As a caregiver you definitely need to take care of yourself too.

Ed1937

Jami, welcome to the forum. Sorry your DH has memory loss. Since he has been diagnosed with lyme's disease, I wonder if that will make it harder to get a diagnosis of dementia? How long has he been fighting lyme's? Even if he were diagnosed with dementia, would that really make a difference? Is it worth pursuing at this point?

I think instead of "early onset", you meant "early stage"? Early onset refers to people under the age of 65.

Jami Boyle

Ed and Jeanne,

Thank you both for your connections. Yes, I mean ES and I understand your point of why do further testing. DH is not interested in further neurological testing. He tested 3 years ago and was told he had mild cognitive decline. Then we were focused on his brother’s decline, getting a real close look at what can lay ahead as we took care of him in our home. David’s increasing immobility, growing danger s with cook stove and wood stove and increasing toileting needs told us it was time for a residential setting. I think both my husband and I are shell shocked from a combination of that lived reality and a potential future for Jonathan. He is working with his doctor for Lyme. I asked to attend his next appointment. My problem right now is handling all these emotions. I felt the anger rise in me again last night. It’s all I can do to not raise my voice. I fantasize about running away. Sigh

Iris L.

You definitely should attend doctor visits. 1) You need to know what's going on. Patents with memory loss are not good reporters. He should sign HIPPA so that the doctor can discuss his case with you.

2) You as a couple need to make future plans. You need POA and other legal documents and financial preparations. It's better to make now while he is aware and can sign.

3) He may already be exhibiting anosognosia, lack of awareness. Even if he understands about his brother, he might still be unaware about himself.

Lyme Disease may cause dementia. It is a difficult disease to treat successfully. Are you a part of any Lyme Disease support groups?

Keep reading and keep posting. The members here know a lot.

Iris

carlog

Hello @Jami Boyle , realizing my own wife has dementia resolved a lot of anger for me, for a while. But it comes back for different reasons now. The major one is her denial that she has changed which leaves me feeling she does not appreciate what I'm doing.

You wrote your husband has no interest in more neurological testing. That might be quite rational in that there is little or no prospect of usefull treatment anyway. But is it part of general denial? Is he willing to tell friends and family he has dementia, or OK with you telling them?

My wife denies her behaviour has been affected by her semantic PPA and does not anybody to know about it, and sometimes does not want me along for doctor visits. But I found I really needed to be tell our close friends and family, in part because I felt the need to explain her behaviour but also because I so desperately needed to be able to talk to people about it.