Soooo not prepared

ElCy

Less than  2.5 weeks ago I thought our lives were fairly normal. We went to the movies (DH drove) and out to dinner. And now, after 2 weeks in Geri psych he will be heading to memory care.

I had no idea he was as far down the rabbit hole as he is. I’m sitting in an empty house. I haven’t lived alone in 43 years (and even then it was for only 6 months).

I’m just so shocked, numb, terrified, sad, grieving…

I thought there would be more time at home with him. I thought I’d have to go through taking his car away, incontenence, sundowning, etc before Memory Care.

Now trying to decide if I should spend more for better place or spend a little less for a nice place to save for more time before Medicaid.

Ed1937

ElCy, I am so sorry. This is an extremely hard part of this journey. When you talk about a "better place", I'm assuming you mean all the bells and whistles? Beautiful landscaping and fountains? Just remember that the most important thing is the kind of care he will get. The beauty is only to look at. Do whatever you think is best for your situation.

Sadderthanever

This is incredible. No wonder you are so traumatized. It has been so soon that I think you need some time to make decisions. Have you seen a therapist, an elder care lawyer? Do you have friends or relatives who can offer you the sensitive compassion you need? Hugs.

toolbeltexpert

Elcy I your journey is so similar to ours. 44 years and now coming up on 4 months since she's been gone. When it comes to choosing cost vs care, if you can spend some time watching them care at the facility or ask a lo who has someone there. Are they both able to transfer to Medicaid? Otherwise you will have to make another move later, which isn't good for you or your dh. Have you started the Medicaid process, it can be a long draw out process if you have a large spend down. Qualifying both medically and financially takes time. I went to the area Agency on aging and they helped guide me thru the Medicaid process, they do all the work. I would still find a cela, in my area they have a no title attorney who has been doing this for 40 years and it was free as well. I will probably  end up having  to requalify because I chose to use my resources to pay for my dw care instead of upgrading our car. It will take me a year and in the mean time I am hoping to sell our farm and continue dw care with the proceeds. That's a big if, but I can always go back to Medicaid if things don't work out. They basically make you broke before you Qualify. As far as all the emotions, I still am shocked as well, like you I thought this was gonna go on at home for several more years.

 I cried my share and still do sometimes, being alone is no cake walk, I had never envisioned us being apart. I am finally getting into a little better place emotionally, I am sleeping better now, my weight loss has halted st 20 pounds even though I eat. I still call my sil daily and talk for a good while. 

Elcy make sure you take care of you, like they say put your oxygen mask on first so you can help your dh. 

Sorry if I am not much help,  I continue to pray for all of us going down this lonesome path. Just today I ran I into the lady realtor who brokered the deal on our house 29 years ago and Her husband has dementia but not very far along, but he has had some violent episodes. I suggested she come here and lurk around. 

Stewart

ElCy

I did all my legal last year. We have no family here. I have a brother 3000 miles away. My friends have been very supportive.

My top 4 are all very nice. One has 2 MC units. One for more moderate dementia, which I think would be good for my husband. It’s the most expensive though and would make things tight in my end. All 4 have good reviews from people I know. I’m going back to take a second look on Thursday.

They are all about 6-14 miles away. There was one I really liked less than 1/4 mile but I’ve heard care isn’t so good so I ruled that out.

I’m seeing Abe’s Garden on Wednesday but I’m sure it will be too expensive and there is a waiting list. (It will be like trying on a wedding dress out of my price range.)

I need to start furniture shopping too. Any suggestions?

MaryG123

What a shock you’ve had ElCy.  I think you’re doing an amazing job, and really admire your positive attitude in the face of such a trial.  Hugs (())

Lorita

Hi ElCy

What happened that he had go into a psych unit?  Did you see any signs of dementia before this?  Was there some sort  of accident or trauma?  Sorry to be asking these questions but it's hard to understand how something happened this quickly.

ElCy

DH diagnosed with MCI in late 2019. Then Covid hit. I saw a steady but slow decline. Typical things with memory. Staring in July he occasionally didn’t know I was his wife. But that only lasted for an hour or so. 

This past month he started getting weird with money. Always wanted to walk around with a lot of cash, not at all typical for him. Even though I had placed limits on his debit card he’d walk into the bank and wrote a check for cash.

Two weeks ago he came into the bedroom around 6 a.m and woke me with a flashlight in my eyes and told me to wake up. I came downstairs in my robe and he asked me why I wasn’t dressed. He told me I didn’t live there and I was psychotic for being there. I dressed and went to work 4 hours early thinking he’d snap out of it when I returned later in the day.

Didn’t happen, he wouldn’t let me in and would not give me medication I needed. This continued with me trying Saturday morning and evening. Sunday morning I pulled into the garage and he picked up a small paint can to throw at me.

I called 911… police and ambulance came and took him to ER. He was then transferred to Geri psych where they are giving meds to control delusions.

He had another neuropsych test where they saw significant decline, enough that he needs constant supervision and memory care.

ElCy

Also, since he doesn’t need any help with personal care (he cooks, does laundry, cleans, is not incontenent, a  caregiver in the home would just be sitting around babysitting for 9 hours a day. Something DH would not allow. He’d throw them out.

Lorita

ElCy, I understand now.  This id not new-  been going on and getting worse for three years.  You did what you could.  Sounds dangerous for him to.be home which is not an option.

Ed is right, the most important thing to consider is the type and amount of care your husband will be getting.  When you visit the different  homes you might try to talk with relatives of the residents if they happen to be there.  Also might want to go at meal time to see about the meals.  When daddy was in a NH I would go to visit at different times so they never knew when I might come.  Also, when you do place him, make friends with the staff -- a little friendliness can go a long way toward his care and how the staff feels about you, and him.

You're not alone in this.  Many of us have gone through this and want to help.  Continue to post and ask questions you have.  Someone is always here and ready to help.  Meanwhile, try to rest and get good sleep at night.

Quilting brings calm

All those things that  happened over the  past year were progression of the disease.  It sounds to me like he has FTD or LBD.  Both fast moving and cover some of the symptoms you mention ( paranoia, delusions, behavioral issues ).  I can understand how this fast progression  would leave  no time to process anything because you just always had to react to things that were happening.

I hope that you get a chance to breathe once he gets into MC and you can feel safe in your own home again.    

Ed1937

ElCy wrote:

I need to start furniture shopping too. Any suggestions?

If you're thinking about furniture for MC, try Salvation Army, Goodwill, or resale shops. Salvation Army or Goodwill should have the best prices for pretty good furniture.

toolbeltexpert

Elcy the place where my dw is furnished everything, a wardrobe, twin bed, three draw night stand. I have been thinking about a recliner for the long days of winter to look out the window at the bird and turkeys. They don't like for the residents to be in their room, so they try to keep them active.  I have found that the bare minimum is what my dw needs. 

Stewart

dayn2nite2

Place him in a facility where he can transition to Medicaid without moving.

ElCy

Unfortunately there are very few with Medicaid beds and they are not very nice or close. Locals have told me to place him where I want and they will help me find a bed in the future.

Gig Harbor

I have realized that the beauty in the surroundings is for the benefit of the spouse. My husband doesn’t look at the paint or decorations. He truly doesn’t care what his furniture looks like. Look for a place that is clean, free from odors, has decent looking meals and where the residents seem calm and relaxed. His care is more important than the looks of the unit. Spend as little as you need to in case Medicaid beds aren’t available when the money runs out.

Marie58

Sorry this is happening so fast. I agree that how the residents are cared for is the most important. Gig stated it well; clean, odor-free, well cared for residents, calm and relaxed  residents, decent food.  Available activities might be important as your husband seems pretty high functioning still. 

As far as furniture, it doesn't have to be fancy or new and you shouldn't need a lot. When I placed my DH, I took his recliner, his dresser, and an extra night stand that was in our guest room. We didn't have an extra bed so I ordered a mattress and bed frame from Costco. By far the best price and they delivered and set it up at the MC with no extra charge. I didn't bother with a headboard.

Best wishes as you make this transition.

dayn2nite2

ElCy wrote:

Unfortunately there are very few with Medicaid beds and they are not very nice or close. Locals have told me to place him where I want and they will help me find a bed in the future.

Good luck with that, it's been my experience that those who offer help are never really around when I've needed it OR there comes an emergency where there's no time for them to get going trying to help me.

[Deleted User]

The user and all related content has been deleted.

Paris20

ElCy, I am so sorry. I do understand exactly how suddenly everything changes with this horrible disease. Yes, there is slow and steady decline but new symptoms erupt, seemingly from nowhere. In my husband’s case it was extreme. He was diagnosed with AD in 2015. We had an aide to help at home but then, this past May, he had a paralyzing stroke. While DH was in the hospital, my daughters and I had to find a facility for him ASAP. I had researched MC places but he needed a skilled nursing facility. My children found an available bed at the best, i.e., most expensive, place in town. It is the best of the worst. The food is very good, care is also good but they are so short-staffed that service has its limits. It’s the best we can do. I just hope my savings last.

Ed1937

ElCy, I doubt you'll get better advice than what Victoria wrote. By following her advice, you'll be doing yourself (and your husband) a very big favor.