“What day of the week is it? What month is it? What year is it? Remember these three words, pen, car and watch. Do you ever feel hopeless? If so, is it all of the time, most of the time, some of the time, a little of the time?” Tim asked those and very many other questions. He asked Mary Ann if I was being nice to her. I made a point of leaving the room for some of the questions, so that my presence would not skew her answers. He got a current list of medications. He checked for any changes in the information from last year. Tim is a Case Manager from our local Area Agency on Aging. By the way, Mary Ann did not do quite as well as usual. She aced the day of the week and the month, but could not come up with the year. In the past she has usually remembered at least two of the three words. He always asked three or four times during the interview what the three words were. This year she was not able to manage remembering the words at all. On the positive side, the number of falls has been reduced dramatically.
If I understand correctly, there is such a place accessible to most everyone. Our Area Agency covers three counties. Tim comes a couple of times a year. Once is the major information gathering time. The book the Agency puts put out each year has hundreds of resources listed on its many pages.
It is through Tim and JAAA that we connected with the local County Health Department. In fact, coincidentally, Public Health Nurse Linda from the County Health Agency will be coming tomorrow for her assessment. She comes every couple of months. It is through her that we have had Bathe Aide Zandra for the last few years every Monday and Wednesday mornings. We pay for that service (around twenty dollars a visit). Those who do not meet certain income guidelines have reduced fees for the service.
Nurse Linda brought us our flu shots this fall. She visits to see if the Bath Aide situation is working well. She checks to see if we have any other needs, although there are many limits on what she has time or money to do for any given situation. She and Tim are always interested in Mary Ann’s falls, any physical problems that might have to do with her safety and the quality of her care.
Even though we are pretty well self-sufficient, it feels good to know that there are folks out there paying attention to our needs, whom we can call if major problems emerge. We can get help finding and evaluating resources.
By virtue of being active in a church, we have additional resources available to us. Our congregation has a Parish Nurse. Margaret is available a couple of hours a week at church to check blood pressures. She comes to visit regularly to bring flowers and food and help out in any way she can.
In our case, the cadre of Volunteers from church is a major support. As I often mention in these posts, they come and spend time with Mary Ann, enriching her days, giving her social contact and a break from my constant hovering. The visits also give me a chance to run errands, or meet with friends over lunch/coffee or head out for a breath of fresh air, or have some time for reading and meditation. Sometimes, as happened earlier this week, they bring food.
One of the major support systems for me is the online group of Caregiver Spouses of those with some form of Lewy Body Dementia [LBD]. That group has so much in common that we can be completely open in sharing our frustrations and fears in language that would scare those who have not been through what we are going through. We can share ideas that actually have been tested in the lab of daily living with LBD or PDD [Parkinson’s Disease Dementia]. It is surprising how much it helps just to discover that what your Loved One is experiencing matches what many others are experiencing. We are able to talk in a matter of fact way about things that would be terrifying otherwise.
In the course of writing these posts I have often mentioned Mary Ann’s Tuesday morning group. That is part of her support system. The Spiritual Formation Group that meets at our house on Wednesday mornings is a part of my support system. Those groups, corporate worship experiences and personal devotional experiences combine to nurture our Spiritual health. Sustaining friendships to the degree possible also helps us maintain a level of equilibrium in our out of control corner of the world. The local Parkinson’s Support Group provides the chance to have some face to face time with others dealing with the same challenges.
Whether or not you are aware of it, those of you who read this blog are important to my ability to continue in the role of Caregiver without losing my bearings. During each day, I think about what is going on in our lives with an eye toward what I will say in the post I will be writing next. As I write about it, what has gone on in that day or two begins to come into focus, allowing me to gain some sort of perspective on it. That perspective steals from it the power to disable and destroy. The struggles are difficult enough to deal with, without my giving them more power than they already have.
While just writing about the day and processing the events is helpful by itself, it is the awareness that there are people reading those words that brings with it some external validation. I have only numbers on a metrics page and a few comments to verify that there are people out there listening, but it makes a difference knowing that you are there.
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The Caregiver Calling 