“What a grand thing, to be loved! What a grander thing still, to love!” ― Victor Hugo
Here is a book with so much wisdom for the caregiver that it needs three posts in my opinion. Sally put me on to The Best Friends Approach to Alzheimer's Care by Virginia Bewll and David Troxel. Sally has started using these principles with Jake. Today's post will deal with emotions that AD patients have. I will apply it to DH for the most part. Two more posts will follow from this book.
Chapter one insightfully lists common emotions and feelings of persons with AD.
- Loss. It took some time for my husband to decide to give up driving. I was glad that he decided, even though he had passed the Alzheimer's driving test for two years in a role. When the driving privilege was abuptly taken from Jake, he experienced a huge loss. Our husbands want meaningful roles. I still look to my husband as a protector of the family. He checks the doors are locked at home and likes to accompany me whenever he can. The other night the dog barked at the smoke detectors making noises. My husband took great pride in handling this noise, taking down the batteries and planning to replace them.
- Isolation and loneliness. It means so much to our husbands to be together. Sally and I both substituted one day in the public schools and Jake came to our house and spent the day with my husband. Next week DH will go to Jake's house while Sally and I are out and about. Jake helped DH with the yard and my hubby will help Jake with painting a fence next week and Sally at Jake's home. I am also concentrating on being WITH my husband as I wrote earlier on this blog on 9/29/11.
- Sadness. Both DH and Jake are not knowledgeable about Alzheimer's, so their sadness is not amplified by what is coming in the future. However, Sally and I are often sad about the situation.
- Confusion. I get asked every morning at least four times where I am going. Sometimes I say, Check the clipboard, where I have printed the schedule for the day. My husband has started to get confused about what word to use, a further deterioration.
- Worry, Axiety and Frustration. We have one large TV in the family room where DH watches movies for most of the day. He has a large collection of cassettes and DVDs and also finds interesting material on cable. This large TV has the only box (of our three TV sets) where we can arrange to tape programs in the future. Last night I wanted to see the program where Dr. Mary Newport was interviewed; DH was very frustrated when I didn't seem to get him back to the right channel. In fact, in his anger and frustration he decided to go to bed angry. He wouldn't take his pills. He wouldn't pray. He was livid that I messed up his TV viewing. This was not intentional on my part because I saw that he was on the news and returned to the news; by this time he thought I had lost some other program he dearly wanted to see.
- Fear and Paranoia. People with Alzheimer's disease often look for an explanation about what is happening to them. (p. 16) One time DH asked me if I were having an affair and of course I assured him that I wasn't and would not have one. He was lonely and this was before I started being WITH him intentionally. (Early on in the disease I started withdrawing emotionally from him, thinking that I would again become a widow as I had in the past.)
- Embarrassment. The person with Alzheimer's disease is in a giant classroom every day, one in which he or she never has the exact answer. (p. 17) It is best to not ask them any questions. Asking their opinion might help at times, but they can't even decide what to eat on the menu in a restaurant.
It sounds like a wonderful book and a very good principle. Have you ever done a post on what you do when you are 'with' your husband?
ReplyDeleteI have to plan each day to be "with" my husband--very important for him. We hold hands a lot. I sit my him when he is watching TV. I can be on my Notebook computer on the Internet on WiFi while he watches TV. A conversation isn't always possible unless he initiates it; I confuse him if I start talking. When we plan to do things, he doesn't have ideas of what to do, but asks "what's of tap" and I try to think of something, even an errand so he can get out of the house. We go to church and Toastmaster events together. We do something with Jake and Sally at least once a week. The conversation between Jake and my husband is often so funny. Sally has to be with Jake more than I have to be with DH. Jake is starting to shadow her and she only substitutes once or twice a week. I can substitute every day and take advantage of this so I can pay off credit cards before I have to stay home or arrange for someone to stay with DH.
ReplyDeleteIt's always nice when we can read a book with lots of helpful information. What wonderful friends you have in Jake and Sally. :)
ReplyDeleteIt's so wonderful that you are reading and taking note of all that's important to know in dealing with this disease.
ReplyDeleteYour friends sound wonderful!
Hugs and prayers,
Hi Carol, good points. I have had this book recommended so your review is very helpful. Is there much in it on a spouse's role in late stage?
ReplyDeleteFor our together times we often go on errands and work as best we can on tasks around the house and yards. I try to wrap activities up before the frustration stage hits.(Sometimes my plans are a bit ambitious,but the Lord knows my heart!
Pray for "Living on Less Money" blogger. She e-mailed me that their son in Texas died and that they were on their way there. I am so shocked. DH and I prayed last night and we will pray at church today.
ReplyDelete