Gulp. So new I hope I’m reading incorrectly

If you don’t mind me asking, how old is your husband? We know how you feel. It’s overwhelming. Depending on what type of dementia he has, it could progress slowly over 15 years or it could progress more quickly. There could be steps in the progression then plateaus or it could be downward more quickly. There is no way to really know. The doctors don’t know. Sadly there is no treatment to slow progression. Learn all you can about the disease and caregiving. Call the Alzheimer’s toll free number 800-272-3900 if you need to talk to someone. They may have resources in your area. You are not alone. We’re here for you. 💜

@SpiralStylz

It's really hard to know what lies ahead at the time of diagnosis. Most folks seem to take it day-to-day creating a Plan B in the event they can no longer provide the best care to their LO.

As I mentioned in your last thread, the oral medications improve function, they do not stop or slow the actual rate of damage to the brain. Improving function might look like better focus, easier word-finding or being able to put on an outfit laid out for them without assistance. The impact on longevity with the infusion medications is hazier, in part, because they're so new. Currently, it seems as if they help a person with Alzheimer's (not vascular, FTD, etc.) remain in the earlier stages for ~6 months more than with placebo. Additionally, it seems that the infusions seem to have the most benefit for younger patients and men. Older patients, black and Hispanic patients and women in general don't seem to do as well as younger white men in this country.

Mt experience was as l7p mentioned. When dad had dementia, 2 of mom's sisters and the mother of a dear friend did as well. While they all ended up in the same place, their journeys were the same but different. None of them were young-onset which tends to progress more quickly.

Auntie was the first diagnosed around 2010 with vascular dementia. Family suspects she had symptoms as early as 2003 when her DH made a deathbed plea to her sister to "really take care of Auntie". My mom inherited a ring her BIL gave my aunt for their 60th anniversary; the jeweler had clearly swapped out the stones for CZs. Auntie was a good natured and lovely person and she mostly remained that way until she passed in early 2018. FWIW, the course of VD is typically shorter than ALZ on average.

Nasty-aunt was diagnosed with vascular dementia in the spring of 2016. Her family placed her in an AL facility not long after where she had a fall breaking her hip and wrist. She was stage 5-ish at the time of the fall but came out of the surgery in stage 7 and died in the fall of the same year.

Dad had mixed dementia (ALZ and WKS). I saw early signs of personality and executive function changes as early as 2005 and significant memory issues by 2008. Mom remained in denial and never had him screened or evaluated for dementia which is a shame as one of his was caused by a vitamin deficiency that is alcohol-related and responds to treatment and lifestyle changes. He wasn't actually diagnosed until mom almost died with him as her medical advocate in late 2016. His early stages progressed slowly, but stages 5, 6 and 7 were relatively brief. He died in spring 2018.

Nonna, friend's mom, was diagnosed in 2017 by her PCP. She was in her early 90s at the time and friend elected not to subject her mom to a full workup once bloodwork and imaging ruled out treatable conditions. Her mom seemed to progress fairly quickly, especially after Nonna developed breast cancer which had gone undetected since Nonna specifically opted out of mammography at 80 stating that she would not elect to treat having nursed relatives through it. It's not clear if the cancer was an exit ramp or if the 2 terminal conditions together hastened the end. She passed in spring 2019.

HB

Most everyone is overwhelmed at first and at some point most just want to run away.

Your life is going to be forever changed by this journey. I think what is important is that you do have quite a bit of control as. to how difficult the journey is.

If you accept that you need Dementia 101 and dive in by reading everything you can get your hands on expecially any thing by Naomi Feil and the 36n hour day you will begin to learn the importance of non-medical treatment of the disease.

Then use this forum. It is maybe the best sorce of information available.

We are here for each other 24/7…we care!!!

I echo Michelle's comments above. Try to have as many 'plan B's' in place as you can. Talk to family members about assistance you may require in the future. Tour memory care facilities and, if you find one you like, get on their list. Talk to a Certified Elder Law Attorney (CELA) about making financial plans for the future, as care can get extremely expensive and there are ways to structure your assets to make it easier. Find a home health care agency that provides care for people with Alzheimer's. Check into 'respite care' facilities (usually memory care facilities) in your area so that, if needed, you can place your loved one there for a limited amount of time to get a break. Talk to your doctor, make sure they understand that you may need medical assistance (anti depressants, anti anxiety, sleep aids) as things progress. If you haven't, find a specialist in dementia (geriatric neurologist or similar) who can monitor his progression and provide medications if/when they are needed. Think about changes you may need to make at home if he starts to wander (dementia locks, gates, etc) to keep both of you safe.

That's a lot of 'to do' lists that are painful reminders of what's coming. I think the most critical are the CELA and neurologist and memory care. In our case, my DH was doing pretty well at home for 12 years, then went into the hospital with pneumonia and had a complete breakdown, requiring immediate transfer into memory care and there was no time to plan, just a scramble to find a space anywhere. It was bad.

This will be harder than you can imagine. There will be times that you think you just can't do it anymore. We have all been there. Gather as much support around you as you can.

And, yes, take time to enjoy every good thing that happens. Lucid moments, dancing to music you both love, going out for an ice cream cone.

Come back here often. We have your back.

I hear you…just the very thought of Alz is overwhelming. Keep coming back to this group. Try to take it one day at a time. Each day can be so very different. Lean on the folks in this group. All the best to you!

So much great advice. Always remember, there are no wrong questions, and there is no judgment when expressing feelings or anything else.