Finding direction when a loved one becomes ill and needs your help as a caregiver is something most readers of this column can identify with. It's absolutely necessary -- but very hard to come by. Sometimes, just finding the will and strength to go on can be overwhelming.
The second task, then, is maintaining your will and momentum -- and that's where many of us just grow weary and tire of our day-in, day-out tasks. That's what Dee found out when the physical health of the man she married started going downhill not many years after they married. That was many years ago. Now, she's wondering what to do.
Let's see if we can help Dee with advice. She wrote me recently, and I'm very concerned for her situation. Here's her letter, from my e-mailbag:
I don't know where to begin. I married this wonderful man 19 years ago. Within six years, his health deteriorated to the point he could not work any longer. I am a nurse and continued to work. He signed up for disability, and we have been able to live on what he received and what I made.
He was able to take care of himself until about five years ago. I retired three years ago. Now I am stuck at home most of the time, taking care of my husband. He can't stand or walk because his legs are too weak. He is in a wheelchair when he is not in bed, and I have to bathe him. He can still feed himself and carry on a decent conversation, but his pain meds cause a little problem occasionally.
I still love him, but I can't go on like this any longer. I don't see an end to this nightmare. I wish he would die, but I still love him. His kids are willing to help some, but that ends after a month or two of effort. I have had it. What can I do?
Dee B., Louisville, Kentucky
I sympathize with you, but that doesn't help you. There is something you might want to do.
Get professional -- paid -- caregiving help into the house. There are home health care agencies that deal with situations like yours all the time. Since your husband is already on disability, the government may pay for such help. But you'll need to check this out. It might not be all day every day, but it would help. Call his doctor for assistance or call the home health agencies yourself. They will come out and evaluate your situation and let you know what they can do.
Quite often, our loved ones will be more cooperative with someone other than their spouse. It would take a big load off your shoulders so you can get back to being the loving and supportive wife I imagine that you want to be. A home health agency will discuss the situation with you, and they will work with you each step of the way after you hire them. And you can call them whenever you think there might be a problem, so their help can be very reassuring,
Another aspect of in-home aid is that the agencies have several people assigned to your loved one's case to help you as well as him. A nurse comes in to do what is necessary. You would be able to let someone else take his blood pressure, give enemas if he needs them, and other things. They will also be able to monitor his reaction to medicines, and you can call the nurse when there is a question of anything. It won't be completely on your shoulders -- and not out of your control and oversight.
A social worker comes in to make sure both of you are doing okay. She might suggest ways for you to get away and take time for yourself. She might also have ideas on how to help your husband if he gets upset or depressed. If I were in his situation, I sure think I would be depressed.
CNAs (certified nurse assistants) help with everything needed on-site. They will bathe your husband, change his sheets, clean his fingernails, and whatever else is needed to take care of him. Sometimes they can even wash dishes, but other things related to his personal care must come first.
If your husband gets sick, the home health care agencies can bring x-ray machines to the house, set-up IVs, and many other things that make it possible for him to stay home longer. If they consider it necessary, they will call an ambulance or other form of transportation to take him to the hospital or to a doctor's appointment.
Having a home health care agency come in is also a protection for you. You know how our society is today. People jump to wrong conclusions very fast. Later it is proven that they were wrong, but the damage is done. No one will ever be able to accuse you of not taking good care of him. You will be protected.
His children can help, but if you will get paid help, they will be able to spend quality time with their father and you as a normal family instead of working all the time when they are there. They should be able to visit with their father and you. Adult children have their own lives and families, and can't stop everything all the time to help you with their father. I doubt whether you or your husband did that for your parents; it just isn't the normal thing to do.
Another thing I see in your letter is what is called "caregiver guilt." You said, "I wish he would die, but I still love him." Don't think you a horrible person for feeling this way. It is normal. You really don't wish him dead. You just want to be out of this nightmare, as you called it.
Please get some paid help right away, and then relax and let them do what they do. Don't try to do it for them or with them. Let them do it. You might even be able to go to a movie, if you want, while they are there. When I was taking care of my parents, I hired someone to come in for eight hour blocks several times. I drove to the Bridges in Madison County (yes, the ones in the movie), and I took pictures of the bridges -- all six of them. It was one of the most relaxing things I did. Life looked much better when I returned to my caregiving role and I was better able to take care of my parents.
I wish you the best. Being able to take care of your husband as long as you have qualifies you for a medal. I wish I could give you one.