I am a caregiver. I care for my husband, Jim, who will be 67 years old on October 6.
Last Spring, Jim had three strokes and a heart attack. The same week that I broke my hip and had a full hip replacement. By mid-June, we were both at home and life was looking up. Jim had mild word-finding problems and wasn't able to effectively use his right hand, but we could still have conversations, still enjoy each other's company, still argue, tease, laugh together.
After a few days, maybe as much as two weeks, I began noticing that Jim wasn't getting better; in fact things were getting worse. His language skills were improving, but his awareness of his safety, his location in both time and place was fuzzy (and often completely absent), and his level of cooperation with his medications was declining. He was becoming more and more resentful of me and of the fact that I was always the bearer of bad news. He couldn't drive. He couldn't drink. I wouldn't take him to buy bourbon. He couldn't take aspirin for pain. Finally, he began refusing his pain medication altogether and would sit on the sofa writhing and moaning, but stubbornly refusing any aid.
In mid-July, I proposed a trip to the Coast for our first anniversary. It would be the first time since our first trip to the Coast - way back in early 2001 - that we would stay at a hotel, but there was no way I could drive the truck and pull the 5th wheel. Although we both tried to make it a celebration, it was clear that Jim was struggling. Our anniversary dinner was hamburgers and fries eaten in our room, which I had bought from the bar across the street. While there, Jim's blood glucose fluctuated wildly, at one point reaching almost 500. He had thought his glucose levels were low and bought candy bars; in fact it was high, and I came very close to calling 911. Fortunately, he responded quickly to the insulin.
Upon our return, I put in a call to Jim's doctor, explaining what had happened, and asking for a clear diagnosis. When I heard the words "vascular dementia," I was stunned. At last I had an answer for why we were having the problems I'd been trying to handle, but "dementia" is such a horrible thing to face. I was able to find a support group online, where I've gotten the most incredible amount of information and validation of all that we've faced, as well as what we can expect. It's not pretty.
For the remainder of July and all of August, I continued to struggle. Jim became more and more unsteady on his feet, yet he would insist on walking downstairs with his shoes untied. We bought shoes with Velcro closures, but he wouldn't wear them. I found him in the garage attempting to open a bottle of wine with his vise. He talked about getting his ladder out to climb up on the roof to clean the chimney. He threatened to walk to the liquor store - 2-1/2 miles away and down a steep incline - when I refused to buy alcohol for him. The day I came home from a therapist appointment and found him outside, shoes untied, carrying pruning shears, I knew I could no longer leave him alone. When he refused to have someone in to help, and then refused to ride in the car with me, because he wasn't going to go anywhere until he could drive again, I became a prisoner in our home.
Again, I called the doctor and was told that if there were any way to get him to the hospital for psychological testing, it desperately needed to be done. Failing that, if he posed a danger to me or to himself - for example, if he actually did try to walk to the store - to call 911 and have him put on a "transfer hold" to be admitted through the ER to the mental ward. When I found him drinking mouthwash, I thought perhaps that was the key. It was not. I was told to get all mouthwash, all ethanol of any kind, out of the house, along with any guns and/or ammunition. With the help of his son, I was able to accomplish this.
On September 3rd, at a party at his son's house, Jim's behavior became even more erratic and verbally abusive. When he cut his hand and we couldn't stop the bleeding, I made the decision to take him to the ER. When we were approaching the VA Hospital, driving up a steep, curvy hill, Jim realized where we were going and became even angrier and resumed the verbal abuse. Then he put my car in neutral. Twice. When I put it back in drive and kept going, he reached over and turned it off. After I started it, he did it again. It was getting dark, we were in a dangerous place to be stopped, but I started it again and drove as quickly as I could to the ER.
After much difficulty, Jim was admitted against his will and spent the next twelve days in the mental ward. At various times, he believed he was in Mexico, he persistently believed that I had spent all of "his" money to build the hospital as a home and that the VA had taken it from me. He believed that I had no place to live. He believed that the year was 2076, and he couldn't recall how many children he has. He also believed he still lived in his childhood neighborhood, and would ask when his mother was coming home. She died in 1964.
On September 15, on the advice of medical staff and with the help of an attorney to gain guardianship, I was able to have Jim transferred to a memory care home, where he lives for now. It's not a good setting for him, although the staff is wonderful and they all love him. He is the most highly-functioning person there (most residents have Alzheimer's Disease, cannot speak, many are incontinent), but because of his continuing threats to "walk away," he requires a locked unit. We are looking for a better placement for him, but all he wants is to come home.
In addition to "brittle" (uncontrolled) diabetes, and the dementia, Jim has congestive heart failure, atrial fibrillation, high blood pressure, and peripheral neuropathy. But Jim insists that his health has never been better, that I am at fault for his uncontrolled diabetes, and that as soon as the nurses teach him how to used the "new" insulin - the one he's used for as long as I've known him - he will be fine and able to come home. Of course, even if this were true, dementia means that Jim cannot learn new things. His short-term memory is largely gone, although he can - as is common with dementia - pull himself together long enough to participate in a conversation, leaving many to believe he's just fine. Unless, of course, you know that we haven't been to Mexico in three years, have never been to China, and the trip we took to the doctor last week wasn't close by, but was across the river, and many miles away.
Well-meaning friends want to "Jim-proof" our house so Jim can come home. They don't realize that if they take away the ladders, he will climb on chairs. If they take away the chairs, he will climb on tables. If they take away the tables, it will be four walls and no longer "home." If they replace the dishes and glasses with plastic ware, he will still be in danger from photograph glass, window glass - whatever he can drop and break or attempt to use as a tool.
They don't realize the stress of managing brittle diabetes - of having to call 911 in the middle of the night because his glucose levels have dropped so low that he's almost comatose and in danger of dying. They don't realize how hard it is for me to exist on four hours of sleep each and every night because I lie awake, touching him to be sure he's breathing. They don't realize that answering the same question 10 times in five minutes - Do I have a doctor's appointment today? What am I seeing the doctor for today? Do you know when my mom will be home? Do you know where my wife is? - is exhausting. They don't realize that Jim can't reason; that there is no cause and effect for him, only what he wants to do in the moment. They don't realize that caring for Jim is NOT like caring for a small child; that child will learn and progress. Jim cannot learn and is regressing.
But mostly they don't realize that after they have done their good deed, Jim-proofing the house, bringing Jim home, leaving us with their good wishes and love, that they will return to normalcy, leaving us here to once again reach a point of crisis.
Do you know a caregiver? I'll bet you do. Give them the gift of your time. Give him or her an afternoon off while you visit with your friend or family member. Provide a meal. Mow the lawn. Rake the leaves. Or, if their loved one has been placed in a home, accept that it was done lovingly and with much guilt and regret and do not criticize or try to fix it. It can't be fixed. Dementia is forever, changing only in a downward spiral. Acknowledge that the one living with it is the one who knows how it really is. Accept that your family member or friend isn't going to get better, and that the caregiver's stress may be slowly impairing his or her own health. Understand that you only add to that stress when you criticize or argue that your solution is better than the one s/he chose.
Understand that nothing is harder than loving someone who has begun a journey known as "The Long Goodbye." Every day is grief. Every day is loss. Every day is pain.