New Here…

Curtis77

I’m new to your page and I’m looking for folks in my situation. My wife is 51 and I’m 44. She has recently been diagnosed with Vascular Dementia. Along with that she has a number of other issues all related to her diabetes. My wife had her first stroke three years ago, since then she’s had several small ones. The first took most of her eye sight and left her with deficiencies on her right leg and arm. The stroke has changed her personality, sometimes she can be cruel towards one daughter but not the other. I’ve noticed a change in her behaviour over the past year, it started with talking to people that weren’t there about a year ago. These days she spaces out most time, can’t remember how to dress herself or wash herself. When she comes back out of the trance like state she gets angry and frustrated - understandably. I’ve reached out for help and it looks as though she maybe at the point for LTC but I’m feeling extremely guilty, she’s only 51! I don’t sleep full nights, I work full time and I’m always trying to tend to her - I’m tired. I don’t think she can be in the house by herself safely anymore and our insurance can’t cover someone there more than 5 hours a day. This sucks.

60 falcon

Hi Curtis.  Welcome.  What a tough spot you and your family are in, I'm sorry.  There are lots of supportive and experienced folks here. I'm sure others will come in.  This is a great place to vent, learn, and to ask questions.

Ed1937

Curtis, welcome to the forum. Sorry you need to be here. Your emotions are normal, and expected. We are much older, but I can't say it is easy. I'm not sure age makes much of a difference once dementia hits. Being so young, you are faced with many things we older people don't have to deal with, and I'm so sorry for that. I don't know how younger people handle all the added stressors.  We have several people on the forum that are dealing with early onset, and they can be a big help for you. If you have any specific questions, please start a new thread for that because once a thread gets going for a while, less people will see your questions. You will get a lot of support here.

Marie58

Curtis, welcome to the forum. You will learn a lot here and get a lot of support. My DH has Alz so I don't now as much about vascular dementia. There are others here who do and hopefully they will chime in. I'm sorry this has affected you both at such a young age. Blessings to you, your DW and your girls.

Paris20

Curtis, welcome to the forum. It’s the place where we spouse-caregivers turn to for support and information, a kind of lifeline for those of us who may be home but who want to reach out. We associate dementia with advanced age. My husband is 79 with Alzheimer’s but my uncle was in his early 50s when symptoms appeared. Disease is disease. Diagnosis is diagnosis. Acceptance comes hard but inaction is worse. We’re at different stages with our LOs, who are at different stages (someone needs to examine caregiver stages) but we’re all here to help each other, judgment-free.

aod326

Hi Curtis. I'm so sorry you have to be here - but glad you have found this amazing resource. I don't know how I would have got through things without it.  My DH had young onset AD, although we didn't know it was AD until a brain autopsy. He was a little older than your DH - his first symptoms appeared age 55, showing up first as seizures.  I was 52 when his symptoms began - while that's older than you, I also needed to navigate the world of caregiving and advocating for him while working full-time. First things first, you have nothing to feel guilty about, and, honestly you'll have a lot of emotions to deal with during the course of her illness, so try to put guilt to one side.

It sounds like you are doing everything you can to care for her - and have been doing so for at least three years. Even with LTC insurance to help, care is extremely expensive, so of course you have to work. And in order to keep your job, you need to be able to sleep. I thought I'd be able to juggle everything, but I ended up needing to place DH in MC in August 2020. Apart from many other things, I was up every hour or so at night, and all my "free" time when I wasn't at work was spent caregiving. (Plus I had to leave work at a moments notice several times to deal with emergencies.) At that point I had used up all my favors from friends who would come in a few hours a day. (None of his family, but that's for another post...) I didn't feel guilty because I was doing the best for him. What if I'd left him for an hour, he wandered and we lost him? (He was lost for 5 hours a couple of days before I'd planned him to go into MC.)

I don't think anyone would choose to use MC in an ideal world, but dementia is FAR from an ideal world. I suggest you start looking at MCs and pick the one that seems the best - then you have it in your back pocket when the time seems right.

As your wife had a stroke(s) in the past, does she receive disability, and thus Medicare? If not, given she is diagnosed, I'd get that in motion. The challenge with getting full coverage for PWD is that, unless the person requires skilled nursing care, it's considered "custodial care" and we caregivers are on our own so to speak.

Sorry for the long reply - I truly empathize with what you're going through.

Fairyland

So sorry for you. I can’t add much except to say I initially read voraciously on Alzheimer’s forums and really got sacred and despondent about all the horrors that sounded inevitable- however I gradually realised that people don’t tend to post as much about the mundane. So with vascular, my mom has been stable cognitively for over a year, even with a stroke using that time. In fact she even improved a little with better structure to her days.

So be careful about generalising, everyone is different. You may stay at this plateau for a while. But do get ready, plans made,  in case of sudden decline.

Crushed

My wife has Alzheimer's  My mother had and died of vascular dementia .  We re here for you

Please please fill in your profile   Don't just put stuff in posts where it gets lost.  We need ages state kids etc all important for us to be able to help

JEDnh2016

Hi Curtis, sorry you have to be here, but this forum has been an emotional life saver for me as I continue on this journey.  

My DW was diagnosed with EO dementia at 60 in 2016, however I was in denial for at least a year or 2 before of her declining cognitive abilities.  She was running finances of her company as she has an MBA, but was now unable to complete simple entries, so we got an employee.  She continued to decline; I got part time caregivers and her sister for a few 4-hour times per week so I could run our businesses.  Then she would refuse my care, and hygiene and changing clothes became impossible.  Then came Covid, and caretakers couldn't come anymore.  Then came urinary incontinence--I was exhausted trying to get her to bathroom, doing laundry, fixing all of the things that confused her (cat food in the coffee maker, food in the dishwasher).  Then she started to untie our boat at the dock, so i needed to look at MC.  I was really scared because at age 64, she actually looks like she is in her 40's, so I searched for (and found) a MC which had some residents in early-mid 60's.

She has been there for 18 months, and is safe, clean and happy.  My visits take her out of the facility for walks on the beach, lunch, visiting grandkids.  She seems happy, can't really have a conversation, doesn't recognize most, but it is the best it can be.  Wicked expensive; sold my company and put proceeds in escrow to pay for 7 or 8years, then who knows.

You are absolutely correct;  This Sucks!  But we do what we can.  Good Luck, and keep visiting here, it will help.

Sligo177

Curtis 77

Yes, welcome.  Our worlds have all been turned upside down, and I am so sorry you are going through this.  Please know that you have people on this site who understand and care.  You are doing the best you can, and your DW is fortunate to have you.  I, like everyone here, have some good hours and feel well, I guess we will be OK - and the bad hours, I tend to be very sad, frustrated, angry, worried...and we don't know for sure what's coming next. 

But lots of these people on the forum have great insight and advice.  Sometimes there are even things that make me smile!  We all need that......

 I'm glad you joined us, and I will keep you in my thoughts.