Before my husband began the Alzheimer's journey he was really healthy. He rarely needed to see doctors. Now, we are regulars. Since I make the medical decisions, I worry a lot about my responsibility. Should we have this procedure, should we wait? Is it necessary?
I have found that if I have a standard way to deal with his health issues, I don't have to worry as much about what to do when something new develops. Is it Alzheimer's, is it something else? I don't assume the new development is due to the Alzheimer's . We check out the symptoms and make sure there is not another cause.
Last week we started noticing more and more confusion and sleeping much of the day. He also had a fall that ended in stitches. I asked the doctor to run several tests. Often confusion is caused by urinary infections. Nothing showed up and I was afraid that the disease was progressing. Then he started running a temperature. Again we could not find the cause when I took him to the emergency room. They sent us home. The next day the temperature was even higher. This time he had symptoms that pointed to a kidney infection and pneumonia. His blood pressure was really low and his kidney out-put was really low.
He was admitted to ICU. I like to stay with him when he is admitted since he gets so confused. We find that if someone stays with him they can help him make sense of what is going on, even if he doesn't totally make sense of things. Also, he can be comforted by our familiarity. He has been really sick and I feel really sad when I see him this way.
We have a pretty strong support system, but since he is in ICU, only immediate family is allowed in. My daughter has been coming in to sit with him while I go home and take care of my puppy and his cat and take showers and get cleaned up.
I know what the ending is for Alzheimer's Disease, but my goal is and always has been to keep him comfortable, productive and as safe as he can be. So we are trying our best to get him through this. Even though unpleasant and definitly not table conversation, I have spoken to my family about his wishes and what our plan will be if something major happens, so things will go smoothly at the end.
I hate the waiting and I dread the results. Will they find something? What if they can't take are of his new ailments or he doesn't respond to the treatments.
Due to the fever, medications, and change of routine, he is terribly confused and agitated. He looked at me the other night and said he thought Debbie was here. I told him Debbie was here. He seemed to be okay with that answer.
Here is some lessons I have learned from our numerous emergencies, procedures and hospital stays. These work for me. Of course, I am continuing to learn.
1. Keep a current medication list in my purse. Update as needed.
2. Keep a cheat sheet of medical history in my purse as well as current symptoms or current notes. I can add questions that were asked that I did not have answers to. That way I can try to find the answers and add them to my cheat sheet.
3. Keep a small note book in my purse to take notes of anything I want to ask the doctor or what he/she says.
4. Grab the phone charger and stick in purse as I am getting ready to go to the hospital. I try then, to continue to carry it in my purse so I should have it when needed.
5. Have a Plan A and B in my head of what I would need to do about my dog and cat's care.
6. Constant updates on the phone to friends and family makes my ear hurt. I am grateful we have so many caring folk, but in the middle of crisis a plan to follow is helpful. I ask one of my children to start the phone tree. Facebook has been an asset. I can just put his status up each day. There are, of course web sites that you can post to so each friend or family member gets the same updates. I envisioned I would use this as his disease progressed.
Having clean underwear has been a problem on the last 2 medical stays. Somehow when things begin to get out of wack at home, I get behind on laundry. This time I just stopped by the store and bought new ones when I went home to get our overnight stuff. My daughter stays with him when I need to go home. She also brings me meals. This time because of the length of stay, my church helped set-up complimentary meals for me since I stay with him and help with his care.
None of this is easy, but it is part of the Alzheimer's journey. I am a firm believer in making a plan and knowing as much as I can about the disease so I can make good decisions. I also have a local support group that I learn a lot about how to prepare for what the future will bring. In the middle of crisis, I have friends and family that I brainstorm with. Of course, I pray and ask God to help guide my decisions and to give me as much wisdom as I need to get through this.
Currently my husband is on day 10 of a hospital stay. He had a kidney infection and pneumonia. He was in ICU 4 days. Normally, any illness will affect the dementia. Sometimes they get back some of that functioning. He is doing pretty well. Of course, we are hoping for a full recovery, but we will shall see.
Please share how you get through the hospital stays. Thanks, Debbie
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