My husband suffered a near-fatal TBI in 2009, which left him damaged. He was air-lifted to the hospital. Two weeks in CCU, two more in ICU and then a full month in ST Elias ICU Specialty Hospital, learning to swallow, then drink, eventually eat soft foods with a spoon. It was two weeks at St Elias before he recognized me. He thought I was a nurse at first, then he was sure I was his sister.
He was finally released from there to an in-patient rehab facility and a week later released to home. It was too soon; he was wobbly both on his feet and in his head, but we managed.With out-patient therapy 3x daily, he improved so much more than they expected. After 18 months, he was mostly independent, but not quite: 90% functionally, mentally, or physically. Life was different, he was different, but we were both determined to make it work. And we did, for the past 15 years.
NOW, my husband of 27 years is sliding into dementia. I find myself humming 🎶Deja vu.🎶 I’m losing him again. We knew he was at higher risk of dementia since the TBI, but he’s only 73. Part of his angry outbursts may simply be frustration, as he feels things slipping away.His memory has been steadily declining for the past couple of years. Then he was hospitalized in ICU with cellulitis last summer. Rashes, swollen legs, infection, delusions and lots of anger. He pulled through that, but it seems to have triggered what’s currently happening. I fear it’s not a slow slide. It’s turning into an uncontrolled mudslide.
I've been trying to talk to him about his failing memory, his inability to figure out simple gadgets, and his increasing, often out-of-the-blue bouts of anger. He has never hit me, not ever, but I find myself subconsciously adding “yet” recently. He’s not a tall man at 5’6”, but weighs a round 220. I’m a 5’0” 75-yr-old woman, struggling with my own health issues.
I want to sell our old house and land and move to town. Everyone says to keep the house, because it’s paid off but I KNOW I can’t live in this 2-story house alone, much less care for him here alone. IF we sell the house, does that play into the 5-year rule for Medicaid (eventually)? We have some savings, but it sounds like most of it will go towards care? I’m not sure what I’ll live on if he ends up in memory care. He does have LTC insurance through his work, but I’m betting it doesn’t cover nearly enough.
He has an appt to see his neurologist tomorrow. I want to have them run baseline tests to see IF he has dementia, if so, what kind, and if there’s anything medically or holistically we could try to slow it down. Yes, I’m grabbing at straws.
My husband has not uttered the words dementia or Alzheimer's. I feel like if I know it’s REAL, know what to expect next, maybe have some clue how fast it’s moving, it might help? I’m not strong anymore. We are both fall risks. I’m just exhausted, and I fear this is just beginning. Again. 😟
I don’t get frustrated with him and say, “I just told you that 2 minutes ago!” If he asks me something 5 times, I answer 5 times like it was the first time. He doesn’t remember that I answered so reminding him of it isn’t helpful.
If he doesn’t want to do something, eat, take a bath, change clothes, I don’t argue or push it. I wait until he’s in a better place and I approach it from a different angle.
His palliative care neurologist recommended a cognitive therapist. We’ve had 3 meetings so far and he meets primarily with me. He is teaching me about the brain and how it may be misinterpreting or miscommunicating my husband’s feelings and causing frustration in his responses. He’s teaching me how to understand and respond more appropriately. I have learned more useful information from this young man than the roughly 6 neurologists and 2 psychiatrists that my husband has seen over the years! He is simply brilliant. Here is his name and contact information. He works remotely.
Shannon
You can tell him Jendayi referred you.
Best!
First and foremost you need to have your legal ducks in a row. Your husband needs to assign you as his DPoA for everything (and also name a second PoA for when you can no longer do it or wish to do it. Maybe if you have kids...?) and a Last Will. Make sure he has a Advance Healthcare Directive, a Pre-need Guardian document, a pre-filled Revocation of PoA, etc. A good certified and experienced Elder law attorney will know what to do. Or maybe even consider a trust, which is more money to create but provides more advantages. You can create the same documents for yourself so that your husband doesn't feel weird or suspicious -- and you need it anyway also.
Next, consult with a financial planner who will consider the landscape of your past, present and future situation and talk to you about whether keeping or selling the house makes financial sense. Make sure you are the beneficiary on all your husbands investments and accounts. Make sure your name is on the house title, car, etc. And make sure that your half of assets are protected in case your husband makes some poor decisions that compromise your savings. A good financial planner, or estate planner or CELA or Medicaid Planner for your home state will be familiar with the Medicaid rules for your home state and can give you insights into what to expect and when. It is worth the investment to get this all in place and know what you're doing so it doesn't need to happen in a crisis.
I wish you fruitful outcome at the neuro appointment. At the check-in ask for the HIPAA Medical Representative form. Have your husband fill in your name as his MR, This will legally allow the doctor to discuss all your husband's medical info with you without your husband having to be present or give further consent. It's not the same as a MPoA, it's just about sharing of private information.
You must definitely talk to the doc about his violent outbursts. The one thing you must come away with are meds to take the edge off his anger. This is not only for you but for him, since he is losing control over it. You need to think about a protocol IF his outbursts get scarier, even just verbally: you should call 911 and have him kept at the hospital as an unsafe discharge. They can transfer him to a psych ward until they find meds that will control the outbursts. This will be important since few or no facility will take a violent person.
Finally, make sure you do lots of self-care. You must make yourself a priority and not feel guilty about it. Call his family, friends, neighbors discretely to take him for half a day to give you a break. When people ask, "How can I help?" this is what you ask them to do: give you time for a break.
I wish you much wisdom and peace in your heart as you work through decisions and planning for your future!
Maybe you could downsize to a small condo that you purchase and own , rather than rent . This way you will be able to live in the condo in town even if your husband goes on Medicaid. Again ask a lawyer first about how to do this , timing wise in your state , so you can still live in the home.
I’m so sorry about all you are going through .
The upside(if there are any)is that vascular dementia is the most aggressive of all the dementias with a life expectancy of just 5 years, so he will go down hill fast.
My late husband had a massive stroke at the age of 48 and later in his life he developed vascular dementia. He was diagnosed in 2018 though was showing signs a good year prior and he died Sept. 2020 at the age of 72.
There is nothing easy about any of the dementias, so it is very important that you're taking care of yourself along the way so you can continue on this very difficult journey with your husband.
And make sure that when you're making any major decisions that they are benefiting both of you.
God bless you.
The attorney will also discuss specifics about rules in your State. Hopefully this will give you some confidence going forward.
I am so sorry for your situation.
The stress alone for you can trigger a stroke. 75 is not an age to play around with nor, is my 57 years old status.
I can feel my stress.. it feels like something springing inside of me, like my insides are going Boinggg!
I stop everything at that point & go relax, I don't care if the house is burning down... I'll be stretched out on the couch.
So, personally, I would start figuring out what to do with the house. It being too much for you is only going to get worse with you heading towards 80.
My college friend's husband & mom died within the same week.. she's 50s & she's been trying to clear out her house & sell it etc., for a year & a half so she can relocate. It's exhausting & overwhelming.
So, I would sell it, get those funds, get you something a lot smaller & maybe get a home caretaker for him so many times a week. And also, I believe there are those adult daycare places where you can take him maybe once or twice a week.
Because the facilities are definitely going to snatch all the money. Whatever he has, they will use that for his care & they WILL want the house!
Are there children, grandkids who can take him for a few days or on some weekends? They can rotate.
You will more than likely, have to call them & tell what you need.. most people won't just offer help. Tell family:: Your kids, his own siblings etc., what you need.
24 years ago I had to call my uncle & tell him to come get his mother as mine was tired, when my mom was taking care of my grandmom, who had alzheimer's....THEIR mother! (3 of them.) Noooo 1 offered.
So this AND a caretaker AND a daycare house will help you tremendously!
You have to make sure YOU are Ok, because if you don't, you'll end up hospitalized yourself & you won't be of help to him or yourself.
It'll get better for you once you get help & size down.
Praying for you!♡ ;-)
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