My name is Bonnie. Since 2000 I tried to care for my husband, with at the time, undiagnosed Alzheimer's - but I knew. His internist said there was nothing wrong. Forty something son in California said I was too dramatic. Son and daughter in law living in my area said Dad was acting funny and should snap out of it.
I keep telling them about the strange things my husband was doing. He would not shower. He would not change clothes. He would leave water running. Leave the stove on. Get lost when he went for a walk. Stop reading books and newspapers. Hide common things around the house. Called 800 numbers from informercials.
All the while I was falling apart. I told my sons that I could not handle this anymore. That I was saving pills and going to check into a motel with a bottle of liquor. I told my sister. I told the social worker from Chicago Jewish Family Services. I told the social worker from Welcome Home in Northfield Illinois.
Finally got my husband to a memory neurologist. Husband tested at length. Gee - he has early on-set Alzheimer's at age 72. Told the neurologist about my pills/motel.
Finally in June 2007 my husband became extremely combative on a late Saturday afternoon. So what to do. Took my bag of pills, went to Jewel for Mike's Lemonade and checked into a motel. Apparently since I am not a drinker, I became quite drunk and started calling friends on my cell phone.
I found and taken to the Psychiatric Ward at Rush Northshore. My sons finally had to get involved. Daughter in law said that I did this only for attention. Well - dah!!!!
Hospital kept me for several days with no counseling. They gave me occupational therapy and physical therapy. Wow!!! I did not have access to a phone. I was more stressed then ever. I needed someone to talk with. Staff was totally indifferent to my plight.
I did learn that my son place my husband in a nursing home.
A friend came to visit and gave me the name of her social worker to contact, which I did after I was released. Social Worker turned out to be manna from heaven.
From nursing home I learned about an Elder Law Attorney - who is also manna from heaven. I could not have completed all the volumes of paperwork for Medicaid without this attorney.
Now that husband is in a wonderful caring nursing home, I am seeing a social worker and attorney is doing his thing - my children have again backed off.
So I still am doing things on my own. I need a huge hug. I need a shoulder to cry on. My social worker tells me to stop second guessing myself. My husband has to stay in the nursing. He is on medication to sedate him as he gets sundowners every evening.
The son in California only phones when it snows in July. His wife never phones.
Local son calls - but really does not want to hear answers. Each wants to make sure the money angle is taken care of.
My Red Hat Society Ladies have been marvelous. They have been very supportive.
Just writing this has been a great help. But I know that I rambled too much. Sorry about that.
I know that my husband is in a good place. I know that I cannot take him back home. I know. I know. I know. But it hurts anyway. This is not how I anticipated spending my Golden Years. Sometimes I think it would be if he died cause this is not quality.
Do not allow the Nursing Home to complete the Medicaid papers. The Nursing Home will drag their feet. The longer it takes for Medicaid to take affect, the more money the Nursing Home gets from you. Get an Elder Law Attorney. He will cost you money up front but save in the long run. He will get your property in your name. He will do the volumes of paperwork. For Medicaid you need four years back of taxes, savings, checking, etc. Fortunately I was a former secretary and had have great files at home. Also learn about a Pooled Trust. Money is put in the trust for expenses for your spouse and does not come out of your living expenses.
Bonnie, I'm so glad for you that things are more or less under control now but what you had to endure to get there! It's sad when we have to take such extreme measures to get done what needs to be done. I hope you will now be able to concentrate on your own health. Take care. Inge
Bonnie, That was not too much rambling; it was a very well put story of grief, sadness and survival... I am so glad you are still alive too tell it. He is in a safe place, it is his disease and his fate; he is being watched over. But you have a life, just like the rest of us. We have the sky above, and ground below, and many friends inbetween. And we are alive. Lots of good people here to share with. AD is awful. But you are alive. And so am I... Thanks for sharing your story. Write again, it helps all of us.
It makes such sense. If I were not here. . . The long aching would no longer Chew my heart. This gray lifelessness would be Over…
Sleep would come easily; Beyond feeling, escape from the numbness. Most problems would be solved . . . For all of us. It makes such sense To enter Oblivion.
I wrote that in February, 1993, after I’d pulled out of the worst of my depression. I had finally sought help the previous summer and with both meds and counseling I recovered and learned my triggers and what to do to prevent a reoccurrence. I made up my mind that I’d never go there again. The biggest mistake I had made was, in not taking care of myself when I added Caregiving to my load of duties. In March, 1988. I put everything---DH, our Daughter, the finances, the housekeeping, the medical—everything ahead of me, and there was no time left over, ever. The Depression started taking over in 1991, just a little at a time. After 6 months of counseling and nearly a year on meds I was well.
Fast forward to 2012, January. I’ ve been Caregiving 24 years. DH has been Dxd with VaD and is now well into Stage 6. Our Daughter is raised, through College, married, and lives in California. DH’s symptoms are worsening and I’ve made plans to Place him—also because we have to get out from under the mortgage. The house is going into a Short Sale. Once he’s Placed, I’ll be apartment hunting. I’m still doing fine, taking care of myself. Then, we have an Altercation and DH is hospitalized. I’m going nuts keeping track of his care and doing the Short Sale paperwork. DH is Dxd with another problem. By Jan., 30th he is, by a miracle, Placed in the NH I’d hoped to get him into, locally. Then I was keeping track of his care and using up all the batteries on our cordless phones (3) everyday apartment hunting. March 1st I signed a lease and by March 2 all my things were in the apartment. Our daughter had flown in and helped dismantle 29 years of living in that house. January 15th, the entire pattern of my days disappeared. Our in-home help shrank from 20 hours a week (combined) to my 4 hours. March 1st I was in a new place—not home. In some ways I was numb. I kept picking at the piles of boxes, slowly getting settled in this unfamiliar place—me alone. And I was still okay. I knew I was fragile and concentrated on doing what I could, but if I wasn’t up to doing more, I’d knock off and relax. Nothing was going anywhere. It would all be there when I got to it. I mourned DH being gone from my 24/7 care. I mourned my home. Slowly, things have gotten better.
However, there’s a new wrinkle now. DH’s new problem is very serious—a second Terminal condition. The treatment for a healthy, active 69 year old would be open heart surgery. He has 42 years of smoking, smoker’s lungs, and advanced VaD. There will be no surgery, per his own medical directives and DNR. Hospice is aboard. The Dr. estimated we have about a year. I was getting ready to have Bariatric Surgery, but I’ve put it on hold for now. I need to be able to concentrate on being fully dedicated to all that entails—a serious lifestyle change. In the meantime I decided to see about a small dose of meds to boost me over the clouds that seem to be hovering. Too much too close together hasn’t beaten me, and I won’t let it. I came out of that pit once and I’m never going back. In March of 1993 I wrote a second poem, reflecting my recovery. Reunion I was so afraid you’d left Forever. A part of me lost, that I’d tried so Hard To keep . . . You are the spirit gleaming As the sparkle in my eyes . . I am so glad you didn’t leave me Forever. Little one, tiny child within me, Wherever you went, Welcome back!
aww carol that is beautiful. i am glad to see you re helping yourself over those looming clouds. hang on to our rope of hope friend. we wont let you fall into the abyss we all know so well! pulling on that rope, hang on.! i so admire all you have accomplished and are an amazing person! divvi