Lewy Body MicroVascular and Parkinson’s “esk” features of PDD

Sandco1000

I am a new caregiver to my spouse who is only 70. After my husband quit his job in April (walked out after 17 years without a word) the signs that I had been seeing occasionally became so extreme. He had a urine infection that became septic and he became enraged. I sustained injuries. He was hallucinating and delusional and I missed all the signs.

The kids got my husband to the hospital for the UTI, but I would not allow the hospital to discharge my husband until they did a complete neurological workup and neuro-psych eval and that’s when the diagnosis of multiple dementias became known. I am trying to watch my emotions but it gets the best of me; when I think he is doing "this" to me, I know I need a check. I still forget that it has only been a short while that I have been living full time with this prognosis and it is emotionally, financially, physically and spiritually draining. I am reaching out for support and guidance from other spouses. I have never seen someone change so rapidly- almost like he was on a bender and in a black out. I am watching my husband withdraw from life and I feel so terribly sad and alone. Then once in awhile he comes back and we see each other. His diagnosis was considered “mild to moderate” but it seems more progressed then earlier this summer.

jfkoc

My husband's route was MCI/Parkinsons/LBD…My first post asked is anyone else wanted run away.

It is hard.

You need to get your team…neurologist who specializes in dementia and an attorney. Please go to alz.com and read everything. Then go to google and read all you can find about LBD.

Get a copy of

Dementia with Lewy Bodies and Parkinson's Disease Dementia: Patient, Family, and Clinician Working Together for Better Outcomes

by Dr. J. Eric Ahlskog MD PhD (Author)

Meds et al are not the same for LBD!!!

Please know we are here for you and will share what we know and be a shoulder to lean on.

mbfraser

Hi, I am sorry that you are going through this. My husband is newly diagnosed with vascular dementia and AD. My understanding is that vascular dementia progresses in steps so there can be a significant decline following a heart or brain event. I would definitely call his neurologist in case he has an existing brain bleed. Also, infection and hospitalizations can cause temporary dementia delirium. I am new as well, so I am just telling you what I have learned so far. I hope this might help you.

jgreen

Dear @Sandco1000 Welcome. Sorry you have to be here but glad you found us.

A couple of thoughts to get you started:

Seek out an Elder Care Attorney - they specialize in all the decisions you are going to have to make regarding your DH. They can help you with financial, healthcare, and legal paperwork and maybe go through options about home care or placement.

@jfkoc gave you a great resource. Another is the book “The 36-Hour Day”. This was recommended to me and I still use it as a good reference. Some good healthcare professionals online are Teepa Snow, Tam Cummings, Natalie Edmonds, and Camille Sinclaire. They produce and post nice videos that explain why our LOs behave in certain ways and offer tips on how we can be better caregivers.

I hope you will check back in with us from time to time to let us know how you are doing. We care! 💝