Saturday, April 24, 2010

Third Book Report--Could It Be Dementia?

So far this is the only Christian book on dementia I have found, and it is fairly new--copyright 2008. It was published in the UK where caregivers are called "carers". The authors, Louis Morse and Roger Hitchings, both work for Pilgrim Homes in England and are used to dealing with dementia patients. They write from a Christian perspective and answered questions for me.
  • Maybe we do need "Parish Nurses" to show how Christian do love each other(John 13:35). I am in the process of finding a support group or maybe starting one. "Looking after someone with dementia is not just time consuming--it is all-consuming. It drains your emotions, your energies and your finances." (p. 170)
  • Loneliness is painful for people with dementia. Okay! That's why my husband loves for me to sit by his side while he watches old movies that bore me. Conversation doesn't always make sense to him, but he loves to be with me, go on errands with me. (He used to not like to go shopping with me before the dementia set in.)  
  • I need to keep my husband as involved as is possible the authors suggest. I came home yesterday and he was preparing to mop the bathroom floors. I will let him finish that instead of doing it myself.
  • My husband swears now when he is frustrated and while this bothers me, I read "The swearing is not because of a suppressed sinful desire--it is the disease. . . .Part of the impact of that terrible illness is this aberrant behaviour, and he has no control over it. It is not that he doesn't want to control it--it is beyond him." (p. 142) Fortunately he doesn't swear at me, just other drivers, or situations that frustrate him.
  • "There needs to be less focus on their 'deficits', and more on their needs as human beings." (p.149) My husband is not a disease, but a wonderful human being with personality, likes and dislikes. The authors stress having photos and memorabilia around so that he is reminded of his likes and memories. He has photos of memories on his Facebook page and I am still trying to get him to respond to grandchildren who post on Facebook. I need to make his scrapbook soon!
  • "Caregiver syndrome can lead to high blood pressure, diabetes and a compromised immune system." (p. 123) I need to take care of myself so I can take care of my husband. I guess I need a support system perhaps more than this blog.
  • He asks me repeatedly "How was your day?" and I repeatedly tell him. I am afraid to ask him how his day was because he won't remember. "People with dementia still need to know that they are loved. They want the same kind of reassurance you would give a child--or anyone for that matter--a hug and a reminder that God loves them too." We often tell each other that we love each other and show it in other ways.
  • "And sometimes, an individual who is not normally able to speak coherently will say the most beautiful Grace. One home manager said, 'Even when everything looks to the contrary, I am convinced that the Lord keeps His connection with us, through to the very end.'" (p. 118) Where once my husband initiated devotions and theological discussion, now I need to initiate Bible reading. Yep! He still prays wonderful prayers, as if he doesn't have dementia.

Sunday, April 11, 2010

Second Book Report--Early Onset Blog Books

Five years ago Linda Fisher's husband died from Early Onset Alzheimer's. While my husband doesn't have that form of dementia, I learned a lot reading Linda's books, really a compilation of her blog. There is also a link to her blog here. When her late husband developed Early Onset, Linda began doing two things: 1) she became an advocate for more funding for the Alzheimer's Association; and 2) she began writing for therapy. Why she even wrote a book on therapeutic writing called Rocks and Pebbles and edited a book of true stores called  Alzheimer's Anthology of Unconditional Love: The 110,000 Missourians with Alzheimer's.

She described her caregiver process as watching her husband Jim die one ability at a time--unlearning. How I identify. First in 2008 my husband wanted to get rid of his extensive theological library--we gave books away and also sold some. He lost interest in the computer (maybe he has been on his computer five or six times in the past year). No longer does he want to work in his workshop and he has sold a lot of his shop machinery to friends. He gardens, vacuums, cleans the carpet and watches TV now and really enjoys this retirement. Probably many women would be happy if their husbands did all of that and they knew where they were at all times like I do!

Linda noted that the caregiver learns a new level of love, not expecting reciprocation. However, every day my husband says he loves me and he trusts me to make decisions. Because others don't live with the problem day to day, they are not aware of his diminishing capacities and there will come a time when I will need to ask for help from others.This week we will celebrate ten years of marriage. I have in the last three years taken on new responsibilities such as finances--scary since we have less income than when we both worked full-time. He trusts me and the responsibility is overwhelming at times. He used to handle repairs and now I have to do that. Call the plumber he says and I have to figure out on his Outlook whom we use.  Every day I am conscious of his disabilities and my inabilities for the challenges.                                                

Linda writes in her second book: Some of us are survivors and expect to continue moving forward with our lives. Others feel like victims and expect more catastrophes in their future. (pp. 16, 17) Money can't buy love or good health, but the lack of it can make life tougher. Either accept the challenge to make it through the tough times and still enjoy life, or decide you can't and sink into despair. (p. 26) What is your caregiving goal? I will venture a guess that it is to take the best care you can of your loved one. You don't care about being the world's best caregiver, or plan on being a professional. Let's face it, when you become a caregiver, you can't spend years practicing before you know what you are doing. You learn to be quick, think on your feet and be creative. (p. 68)

Linda writes also in this second volume that life should never be in a holding pattern waiting for a season to change. Living life in dread of the next season, and what it may bring, can steal our joy. I believe joy delayed is joy lost. The important thing is to embrace today and celebrate the festivals of the current season. (p. 132)

Linda, thanks for publishing these two books taken from your blog. I feel like we had biscuits, gravy and coffee together (her favorite meal) and I feel like I have a new friend with your well-written books.