-
What worries you most as a caregiver?
The worries of being a caregiver is the topic of Jamie Askari’s latest column (linked below). Jamie cares for her husband, who was diagnosed with PD in his late 30s, and she worries most about him falling, but also recognises how unhelpful worrying can be.
Can you relate to Jamie’s experience? What do you worry about? What helps alleviate your worries?
Column here: https://parkinsonsnewstoday.com/columns/worry-goes-hand-with-life-parkinsons-caregiver/
-
6 Replies
-
Worry so much about how to help my husband as this disease progresses, our intimacy, our plans we had for our retirement years; most of all watching him lose his normal abilities into debilitating life (activities, vacations, home downsizing, moving to one-level) now all need to be adjusted, sadness, taking on all the expectations of disease-specific care-giving; role changes in taking care of all home maintenance, etc. It’s so hard to watch him lose his strength, his self reliance, his vibrance, & independence. I’m sad & angry that we together have this fight before us. But, I do have a wonderful therapist. I feel as I have to be doctor advocate bc his us not very helpful with all of the resources available or need. Over the course of these last 2+ years since diagnosis, he never referred him to any resources except a support group near us (which is great). But I was forced to fight this on my own, & finally found great specialty therapy despite his neuro; & now must find another for better care & support. Thnx for listening…
-
Hi Outdoorgal64, your husband is blessed to have you in his corner. I get the sense from your post that you are experiencing a lot of the feelings associated with grief, which is totally understandable given all that you’re up against. I was glad to read you have a good therapist to support you. Do you have any fun outlets for yourself (i.e., hobbies, friend groups) that can help alleviate some of the stress you’re under?
-
-
I can only begin to imagine living with early onset PD can be. My wife was officially diagnosed a few years ago in her 60’s but as we learned more we realized that she has been showing signs for many years before that. Now she’s 69 and I’m 72. In addition to PD we both battle skin cancer, and I have severe Crohn’s disease and stage 4 metastatic prostatic cancer.
She is increasingly having memory issues and rarely drives anymore. We only have each other (family members pretty much deserted us due to misinterpreting our efforts to deal with PD as me trying to control her) so we are on our own. I worry about who will help her if I am unable to since her ability to do household chores safely is declining almost daily.
-
Hi dmcconnaughay, the situation you’ve described sounds very challenging indeed, and my heart goes out to you and your wife. Are there any professional services you could use to help alleviate some of the burden on yourself – e.g., house cleaning, lawn care, personal support care for your wife and/or yourself? Even something like a meal kit or grocery delivery service could be really helpful.
-
-
Sorry it’s taken so long to respond. We have done some checking around but haven’t found anything that we could afford. Even though we are pretty sure there are others in our situation in the area there doesn’t even seem to be a support group to turn to.
However, we are managing and treasuring each moment we have together.
-
I’m sorry affordable support isn’t readily available in your area, but I’m glad you’re cherishing your time together all the same. From personal experience, I know how much better it is to face challenges alongside someone you care about (and who cares for you, too). <3
-
Log in to reply.