Midwest Gal You just never know what's next

Midwest Gal

I really thought that I could make it to the end of this journey with DH at home. I worked with mentally and intellectually disabled people for close to 40 years. I assumed i had more "tools" than most. It seemed that most the time my DH was very appreciative and kind, but things can change pretty darn fast. Things got crazy with DH either running down the road or over the back hill into the timber (at times in his socks). Other times he assumed that I was an intruder and became very upset with me here. My DH is a bit strong determined man. You might say that I had a "come to Jesus" experience when I placed myself in our locked car to keep safe. Something had to change. The night before I had taken him to ER upon the suggested of his physician but was just sent home with a bottle of Lorazepam. Soon after DH had a routine appointment at the physician office. I made the huge mistake of giving him 3 hours' notice of the appointment. He started demanding to go 3 hours early until the house was shaking so of course we climbed in the car. He agreed to take a Lorazepam before leaving. We walk into the doctor's office and by then the pills are working so he is everyone's best friend, but 10 years of being the brave little soldier standing strong, being positive just turned to mush. I started to cry and could not stop. The doctor was very kind and called an ambulance and had DH sent back to the hospital. He advocated that he be admitted this time, which he was. He remained there for 9 days with 24 hour 1-1 CNA in a private room on a regular floor but monitored by the psychiatrist. He was wild there with staff assist calls and injections to calm him. The memory home that I did look at I liked the best months ago (just in case) had 1 opening and yes he is there now. He never came home and most likely never will. My heart is broken but I had no idea that I was that mentally exhausted until I hit the brick wall. I still find myself in tears sitting in my recliner just staring at the TV like i am in a trance just from exhaustion. I even had to furnish his room at the memory home within a few hours. Thank goodness for my son who helped me pull furniture from our house and have him all set up in such a short time. As I look back I feel fortunate that things fell into place so well. I was never physically harmed, none of my friends, relatives, or police ever had to tangle with him, the doctors were very supportive and never pressured me to get him out of the hospital sooner or bring him home, the memory home staff jumped right in and provided close support. When I start to feel guilty (most the time) I have to remember that this is a progressive illness. I have visited every day as there are no visiting delays as some have noted. I'm not sure I even could care for him again full time. My advice to everyone is to plan for the unplanned events. Do all research in advance as things can happen fast and by then it's hard to think straight.

PookieBlue

Midwest Gal, 

   Thank you for your post. I grew up in the Midwest and also think my background gives me some tools for caregiving that have been beneficial. I worked as an LPN and had experience in nursing homes. I also worked in Valdez, Alaska with 110 developmentally challenged individuals. So far my DH has had a slow decline and currently needs to be micromanaged to keep our household calm. We listen to a lot of Secret Gardens and Yanni music. 

   Next week I take him to see his PCP for a physical referral for Adult Day Care. Fortunately for me he has become a bit more agreeable in this later stage. He is quite use to me taking him to the Ophthalmologist every five weeks for an eye injection. He doesn’t know I am looking into Day Care and I am not giving him any warning. After having been married to him to 35 years, my inclination is that he would have refused Day Care. He is extremely introverted. I have no idea how this is going to play out. We’ll see.

  It sounds like you have been an Angel caring for your DH. I’m glad you have your son for support. Try not to feel guilty. Your life is just as important as his and you do deserve some reprieve. I appreciate your advice on doing research in advance. I hope I don’t run out of time before I have a definitive plan in place.

 Valerie 

Denise1847

Thank you for your post. Until I started on this site, I buried my head in the sand and did nothing to investigate plan B or C. It is posts like yours that have motivated me to look into memory care facilities and at home care.

God bless you. I hope you find peace and comfort.

Midwest Gal

I received this from a friend Stands true

White Crane

Midwest Gal, you took good care of him for a long time. Now you’re still taking good care of him by making sure he’s in a safe place. And you’re also taking care of you. I hope you can find peace and comfort knowing he is well cared for. No need to feel guilty. Sending hugs.

toolbeltexpert

Midwest Gal I totally get how you feel. I read your post from my recliner,I just got home from the memory care facility today was dw's birthday. She didn't know it was her birthday 7and all day we sang happy birthday and she would say is it my birthday? We had pizza, ice cream and cake. I got enough for everybody and the staff. It was fun but tiring me out then 430 hit and the SD started so I hit the exit. Now I am totally drained just wanting to sleep. You are doing a great job, and it sounds like your plan went off without a hitch. Take some rest. That picture says it right.

Stewart

Ed1937

Gal, your emotions are understandable, and your advice is spot on. Your job as a caregiver is not over, but it has changed significantly. You don't have to do the hands-on part 24/7. But you are now the best advocate he could ask for. That's what he needs from you now. Whatever you do, keep posting. We're here for you.

JoseyWales

Midwest Gal - your story sounds so much like mine. I'm also in the midwest, and have my own stories of DH running away from me (so many times), hiding from him in my car, hiding in the house, trips to the ER where they just sent him home with me..... I have no idea how I survived it all. But I did, and you will, too.

My DH has been in memory care for 15 months. It's taken a long time to get over the biggest stresses of caregiving and be able to relax at home. Now you have a whole team of people there to help you with your DH, and you can get rest at night.

SDianeL

your post hit home. My husband is 2 years post diagnosis and it is progressing slowly so far but lately I've noticed more confusion. My daughter-in-law who is a nurse told me to start checking into memory care now and get on the waiting lists. I haven't done it yet. I can't seem to accept that it will have to happen. Your post shook some sense into me. I will start looking soon. His care is by the VA and they have limited facilities in our area. Also I wonder if you can get on a waiting list unless the physician does a referral?? Does the physician have to refer them? I'll start with the VA and see what they say. Get some rest and relaxation so you can continue to go visit him. Try not to feel guilty. I know that's difficult some times.

Midwest Gal

To SDianeL In my area you do not need a physician referral for memory care. The ones I looked at required their own health care professional (usually a nurse) meet the candidate and do an assessment within 30 days of the admission. Also the one that my DH is at does not accept Medicaid so everyone is private pay which is another significant issue. There were services 5 miles from my home but it had poor reviews, looked drab and was $4,000 a month MORE than the one that was 25 miles from home that I chose for DH. The one I picked was much more modern, professional and just a better fit. A third one that I looked at had more activities but just too many residents all under one roof and seemed more corporate than homey. I did consider that one for their day program prior to my DH move but when I toured it appeared to be mostly old women and no peer group for DH who looks more like a strong rancher. So lots to consider. Features like private rooms, private bathrooms, outdoor courtyards, cleanliness, peer groups, activities, the general knowledge of the staff and of course "the price" is all considerations. It's hard when you first look as you remember your DH as that healthy, strong bright person and not someone dozing off in a recliner. It's a tough journey for sure. Good luck. Hope you have some good options.