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  • This topic has 6 replies, 4 voices, and was last updated 1 month, 1 week ago by DeAnn R.

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      • #21911
        DeAnn R
        Keymaster

        When you have a disease that’s considered the number one genetic killer of infants, getting old doesn’t cross your mind that often. At least it didn’t for me. If I didn’t think about aging I certainly didn’t fathom my parents getting old. Now that I’m 40 though it’s actually becoming reality. My Mom is approaching 68 as her birthday is less than 2 months away. Don’t tell her I spilled the beans on her age. As she ages I have to take a look at her role as a caregiver, and look to the future.

        When Dad passed away a few years ago it was quite a shock. Although most kids outlive their parents, it’s not always the case with SMA. At any rate it gave me a reality check. I need to be prepared to be totally self-reliant. Not only that, I need to be aware of Mom’s needs. She’s always said doing my cares keeps her young, but I have to be careful not to over extend that. At the moment I think we have a good balance, but it’s something I always need to re-evaluate.

        Being self-reliant doesn’t mean I have to do things totally on my own. Certainly when you can’t reach your face that’s not possible. Therefore I have an entire crew to help me including PCA’s, family, friends and neighbors. It is my responsibility though to coordinate everything to make sure my needs are met. Not only that, I make all of my appointments and schedule my transportation to get there. In truth it can be overwhelming, but as an adult those are my responsibilities. Besides with that stuff taken care of Mom & I can do fun things like plan our next project.

        Mom has done so much for me my entire life. Thus she deserves something special for her birthday. Nothing I could give would be enough. However I know one of her least favorite things to do is grocery shopping and spending a lot of time in the kitchen. Therefore I’m getting her a Hello Fresh subscription. Ingredients delivered right to her door with easy prep instructions. Has anyone tried Hello Fresh or other subscription boxes? Fingers crossed she likes it!

        Do you think about your aging parents? What steps have you taken to become self-reliant? If it’s not something you’ve thought about I encourage you to do so.

      • #22026
        Patrick Lenihan
        Participant

        This might be the most important post I have read on this forum. If one’s parents, family members or spouse are their primary caregivers one must have a plan to deal with inevitable day when they are too old to do the job or when they pass away. I live thousands of miles away from my family and my parents are elderly so I already have a support system in place. One thing I would like to add is that if anybody’s parents want to leave money in their wills to their children with SMA they should talk with an estate planner and set up a special needs trust so their child or children don’t lose any benefits they might need to maintain there independence.

        I have tried Hello Fresh and I think that is a great gift idea for your mom.

      • #22032
        DeAnn R
        Keymaster

        Thanks Patrick!  I don’t think it’s a topic that’s discussed much.  Good suggestion in regards to estate planning as well.  After my dad passed my mom met with a lawyer to discuss things in the event something would happen to her.  Not something you want to do, but certainly gives you piece of mind.

         

      • #22037
        Adnan Hafizovic
        Participant

        Like you DeAnn  I lost my father, he died eight years ago, of course it struck me because he had been suffering from Parkinson’s for a long time. I watched him how he become a plant from a strong, well-educated man. But life is like that, my mom is 69 and I honestly wonder what life would be like without her. I know I’ll manage somehow, but we with SMA  area lot of conected with our parents. I think we are attached to our parents because we are physically weak and that weakness affects our emotions, most of us have problems with depression and anxiety.

      • #22048
        Alyssa Silva
        Keymaster

        My parents are my main caregivers and this has been on my mind a lot as of late. Last summer, my father had a pretty frightening health scare which made us question that “what if.” We don’t have a plan in place yet but of course it has been discussed.

      • #22053
        DeAnn R
        Keymaster

        Adnan, I agree many of us have a special bond with our parents. They care for us and about us our entire lives. Alyssa, it’s good you’ve at least discussed it. It gives our parents piece of mind to know we’ll be taken care of. Talking about it is a good first step.

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