Standing on the Sandy Knoll

Credit given to our members who generously attended, shared and added to the discussion, despite having lost their spouses. It couldn’t have been an easy meeting for them but they were gracious and their comments were valuable.

THIS MEETING had at its core, the hot truth of the subject of caregivers. They are for the most part our spouses, the one person we love who love us. Discussing them hits a vulnerable point of who we are. The image that comes closest to the feeling is standing on a sandy knoll, while the sand is blowing and shifting while you fight to keep your balance. These are love relationships, many are marriages of long-standing. By the time you face the diagnosis, the both of you have settled in to the best roles for each of you – who pays bills, who is the gardener, the cook, the decorator and so on. Most have grown children and the couple has been looking forward to the next phase. Then one day, the diagnosis enters your relationship and the roles, the hopes and dreams, all are suddenly subject to change. Not that change occurs immediately. But no one wants their intimate relationship to evolve into a medical care relationship. If your spouse is healthy and strong, it is a blow to your sense of self to feel like you’ve aged 20 years, more like his mother than his lover. These is even harder if he’s significantly younger than you

“I’m not going to drag my husband down.”

The nearly universal affirmation of this statement by one of the group shows the heart of these women. There are, within that, a variety of different issues.

Age of spouse. The PD partner might benefit from support groups or assisted living while the spouse is far from it. One woman said that she’d be open to her husband letting her go to assisted living to make it easier for him. On the other hand, one of the members who could use a little more support from her spouse, explained that , since he’s 12 much older than she, she sometimes gets impatient waiting for his help.
Personality issues. Most women are used to the “care-taking” role, many men are not. But different personalities also handle the stress of care-giving differently. Some of us are just born patient, generous, supportive and strong.Some are not but that doesn’t make them bad. We know our spouses, their strength and weakness and can support them. But having been on that side of care-giving for a parent and watched others deal with the same situation, I see that anyone can feel exhausted, frustrated and trapped from time to time in that situation. On the other hand, I can see that I have seen in my spouse, since the diagnosis, an amazing strength, understanding and generosity every day. Other women said that their marriages had been strengthened by the challenges the disease brought on.
Stress. One insightful woman shared a change from the Parkinson’s that has been a stressor. It now takes her longer to do many things. Her speed of just getting through the day has been nearly cut in half, leaving a sometimes impatient husband waiting for her.
Intimacy. Keeping the intimate side of your relationship fulfilling for both is important but can be a challenge due to symptoms of PD and the side effects of medications for both. A question posed was what to do when physical issues made intimacy difficult or painful despite mental desire. Suggestions were made such as consult your doctor for possible medicine changes or to check for physical ones, Over the counter products that can ease comfort were also suggested. Open communication and honesty between partners was stressed as key to dealing with problems.

Having a speaker come address the group was postponed until interest in the topic was measured. I regret this delay because support for hearing the speaker was universal. One woman expressed it best, saying “I see the frustration on his face.” “What is he thinking and how can I help make it better?”. I’ll be following up with renewed apologies for the gracious speaker.

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