This topic contains 12 replies, has 4 voices, and was last updated by  Amelie 1 month, 1 week ago.

  • Author
    Posts
  • #14975
     Amelie 
    Participant

    Hello. 8 months now that we have learnt about my husband’s PD. We are both still working, Although I can see that some days are difficult for him. Some days he cannot make it, so he has to take a day off. We live in a house where our room is on 1st floor. I am wondering if we should already consider moving to a house on ground floor only.  Have you been through this already? Any comment, advice would be much appreciated.  Thank you.

     

  • #14977
     Jean Mellano 
    Keymaster

    Hi amelie. I was diagnosed in 2015.  I lived in a house by myself that had stairs. In 2017  I moved to a retirement community as I knew I didn’t want the responsibility of my house and hated shoveling snow in the winter.  I still live independently knowing that if I need help I can easily move to assisted living and/ or nursing care in the same community should I need it.  I have no regrets.  However, selling the home I had lived in for over 3o years was not easy emotionally.   It is good that u r thinking ahead.  Take time to discuss with your husband  and make an informed decision rather than potentially having to make a rash decision because u have to.  Good luck

  • #14979
     Amelie 
    Participant

    Thank you Jean.   Oh how I understand your emotions.

    Yes our hearts say ‘this is our house’, but our mind say ‘may be it is reasonable to make the move now’, as nobody knows about the future.

    I am the one raising the subject with my husband.    What I am afraid too is that if & when we have to take this hard decision, he is not that well, and I will be alone dealing with all this, and on top will have to cater for him too.  At the same time, we are trying to stay positive and say  it might never happen….  Oh how hard all this is.

     

     

    • #14990
       Ally 
      Keymaster

      This is definitely a very tricky subject, Amelie. Thank you for bringing it up. Planning for an uncertain future is challenging on its own, but when you add in the complex emotions that accompany chronic illness/disability and caregiving along with the stress of selling your home, it just gets that much tougher!

      I think you’re wise to at least start the conversation now — talk to your husband about different options and try not to feel the pressure to make a decision right away. It’s a sensitive topic for both of you but if you start to take baby steps now, you’ll likely feel more prepared for the bigger decisions down the line. I would love to hear more from you as you and your husband move forward with this process. I’m sure your experience will be helpful to other members, too. 🙂

  • #14980
     Jean Mellano 
    Keymaster

    Amelie, my heart goes out to you and your husband.   You are in a very difficult position.   However, I believe you are a strong woman since you are trying to plan  for the future of you and your husband.  With the help and support of 2 of my closest friends (who helped me through the loss of my soulmate in 2015) I was able to do what I needed to do to make the move to a place that gave me more security living by myself with an incurable, progressive disease.

  • #14984
     Debra L Bomaster 
    Participant

    Hi, I was diagnosed in April of 2019, I have been considering for 2 years of selling my house and moving to a condo. I lived alone, with basement and second floor stairs.  End of the day going up to bed was the worst.  I chalked up my lack of motivation, sore muscles, fatigue  to being over weight and growing old.  It is now July 2019 I have sold my house of 13 years and bought a condo.  I had two years to think about selling but, the PD diagnosis was the tipping point.

    My old house is now be a family home soon to welcome a new baby.  The new buyers will love the house as much as I loved living there.

     

    • #14988
       Jean Mellano 
      Keymaster

      Debra, thanks for sharing.  the PD diagnosis plus basement and 2nd floor stairs were the deciding factors for me as well.  And, a young family with children moved into my house as well

    • #15007
       Ally 
      Keymaster

      Thanks for sharing, Debra. Thinking about all the happy memories your home will help the new owners create put a smile on my face. I hope that you enjoy creating new memories of your own in your condo! 🙂

  • #14986
     Amelie 
    Participant

    Thank you Jean for your kind words.

  • #14987
     Amelie 
    Participant

    Thank you Debra for the sharing.

     

  • #14995
     Amelie 
    Participant

    Hi Ally,  you made a good summary of it.  Thank you.  Yes I will be taking baby steps as you say.   We have a smaller room downstairs, and a small bathroom too.  So next week I am taking some days off, and with the help of some friends, we will bring a double bed which is upstairs, in the room downstairs.  So then we will have a small room downstairs, which might be simpler to start with. For the moment he is Ok and can still climb the stairs.   This will give us time to think better of the next steps.  Yes we keep talking my husband and I about the good decision to be taken,   and we are simply going around in circles….  So contradictory.  We want to stay positive but at the same time we do not know what kind of future is waiting for us…

  • #15006
     Jean Mellano 
    Keymaster

    Amelie, a major life change decision (especially if it was not in your plan ) deserves a fair amount of discussion between you and your husband.  As for the future, I have found for myself, it is best not to worry about what could happen with my PD progression and focus on what I do have in the present moment.  Yoga  and meditation has helped me do this, although I admit, it can be quite challenging to focus on the present moment, especially when I am having a bad PD day.

     

    Depending on your age and when you live, you might find a CCRC (Continuing Care Retirement Community) may be something you want to look into.  That is the type of community I moved to.  There are some in NY and I believe they are popular in Florida.

  • #15009
     Amelie 
    Participant

    Hi Jean,  I am 57, and my husband 58, going on 59 next month.  We are both still going to work.  Although this morning he told me that he is feeling tired, and might consider stopping.  Well we will see how it goes…..  And yes it was not at all in our plans to move.  So we are talking about it again and again… in order  to take the right decision.

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