In need of advice

The time I thought I had to ease into the transition from walker to wheelchair has run out. I’m not ashamed to use a wheelchair or any assistive tools, but it seems my family is either really uncomfortable or just can’t seem to wrap their mind around me requiring mobility assistance.

Despite my power chair, back up manual chair and my rollator, the living room looks like a medical supply store showroom. They’re all shiny and new and although I was advised to make use of them over a year ago, it hasn’t happened.

I really need your advice and thoughts on a key to taking better care of myself. My dad, for the most part is aware of my difficulties, has been the one to take me to doctors all over Manhattan and Long Island, yet when he sees me having to crawl, doesn’t consider that the time has come. I have to be very careful in how I present things to him or he can spin it that I’m somehow criticizing him or his favorite, that he’s a slave and “everyone is so ungrateful.” It can even get uglier than that.

So how do I tell him I’m going to need him to push my wheelchair (the house inaccessible and the power chair can’t be moved until I move). and have him both take it seriously but not turn it into some battle that doesn’t even make sense to me?

I don’t want to rely on others, but I am no less than a prisoner in my bedroom which feels more like a cell lately. How do I introduce this and make it stick? Sometimes he and others have really stepped up and gone above and beyond only for things to fizzle and I end up back where I started.

What am I missing? Am I handling things wrong? Do I need to approach it differently? Is my word just not enough to get through? Please share any advice you have, particularly if you’ve had your own difficulties with loved ones accepting the changes you’ve made to adapt and thrive!

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13 thoughts on “In need of advice

  1. First can you get certification of some sort from the doctor that you need these devices. Are they embarrassed that their friends might see you. I would think I would be more embarrassed then my family. I know how rough it was for my mom to go from her rollator to a wheelchair and to feel dependent on others. I don’t understand families that don’t give assistance to their family members. My dad spent most of his later years taking care of every need his wife, my mom, needed. Sure there were times that he got frustrated, it can’t be helped. It is hard on both, but he wouldn’t let anyone else help her. She stayed here til she passed and she Parkinson’s disease and Dementia. Can you talk reasonably to your dad at all? Have some paperwork from the dr if possible and try to calmly explain the help you need. I have been following your story for some time and I know how hard it is for you. I gather you haven’t found a home to live in yet. I will continue to pray for you, for help and a home and people that will care for you in the way you need it. God bless you and sending you love. ❤

    You can email me if you just need someone to talk to. terri_smeigh@yahoo.com I go by Tessa on here, but everyone at home knows me as Terri

    Liked by 3 people

    • Dear Terri. Thank you for your input and sugesstions. My dad has seen the doctors prescribed the wheelchair, the wheelchair tech made several visits here and even the bill to the insurance company of over $2,000 of equipment they seem medically necessary, but perhaps something specific on paper or perhaps getting one of my docs to speak with him would be more convincing. You make a good point. You touch on a biggie. I’m having difficulty adapting and accepting my limitations which makes it awkward to begin with. I don’t want to have to say those words out loud. I don’t want to need help, but deep down I realize I need to change that mindset. I’m so sorry for your loss, buy I’m grateful she’s with the L-rd and no longer suffering.
      I never know which version of my dad I’ll get, but if it came from a physician, it may also protect me from the possibility of being screamed out. I’m going to speak with the physicians on team Dani! Thank you so much.
      Yep, no housing has come through yet, but I’m in touch with some local officials at well as my US senators regarding this. I’m very grateful for your prayers as well as your continued support and kindness. I’m sending love to you and pray that Heavenly Father blesses you with all good things. My email is zebracourage@yahoo I’ll be in touch, sweetie. xo Dani

      Liked by 2 people

      • I was going to suggest actually talking to the doctor who could explain what you are dealing with directly to him. I hope that does help.

        I understand not wanting to admit that you need those items. It was hard on mom and I know it would be hard on me. I still walk, but not far. Plus people stare at you especially if you are still young by their viewpoints.

        Thank you for the condolences. She would tell you to fight for what you need, but understand if you couldn’t.

        Wishing you much luck, love and my prayers as usual. ❤ Try to be strong.

        xoxxo Terri

        Liked by 2 people

      • Terri, thank you again. Your wisdom and compassion make you such a rare gem. I hate that you know what this kind of stuff is like from your own experience, but grateful to have your guidance. My PCP and I need to speak first. There are things I need her to know and the time to do so hasn’t been there. If anyone could gently “break the news” to my dad and have him listen, it would be her. I’m taking your advice. I’m so incredibly grateful we crossed paths here. Definitely divine intervention. xo

        Liked by 1 person

  2. Chances are, you’re not seeing this wrong. Your family life is difficult. You have to accept it for what it is.
    There is also a very good chance that the dysfunction around you is aiding in your present condition. You should be able to count on family, especially when one is not well. Ashamed, is as if accepting the fault. One generally does not feel that way unless they’ve had a part to play in the situation.
    It would be well to get out of the environment if you have this option. Away from the constant neglect of the situation, you might find your body getting back to its old self.

    Liked by 1 person

    • Wow. It’s amazing how you’ve caught onto the dynamic. I’m really grateful for your response because you point out things that I really do need to consider and no longer allow to have power over me. Thank you!
      I have been attempting to get proper, independent housing. I’m on waiting lists that could easily have me on hold for about 10 years more. I’ve reached out to my local and state officials at well as US senators, but so far, nothing has come of it. I’m following up with them in letters this week and I’m truly hoping my determination pays off. I completely agree that my environment is exacerbing my symptoms. xo Dani

      Liked by 1 person

  3. Seems you qualify for social security disability benefit. That income and being on medicare should give you a wide range of opportunity. The city in which you live probably has the most and best for handicapped outreach. Also some home care provider assistance could give family member a break even for a few days. Father has lived with me last 13 years and I am his sole caretaker. He is 92. He gets around just fine but I do all driving, financial, cooking, etc. At 66 I am slowing down but arts & crafts, reading and blogging fill my day with a great deal of enrichment. I learn that some of our confinement despite limitations may be self imposed.

    Liked by 1 person

    • Thank you for the response. I receive SSI but have been told I’m ineligible for SSD as I was disabled before age 18, but didn’t work enough by the time I applied to qualify. In a year, I receive less than $6,000 plus SNAP for food. Just my lucky, I live just outside NYC in Nassau County which is known for having less resources for the physically disabled than what’s typically available. I am eligible for a home health aide but my mother will not allow anyone in the house whether it be a friend or stranger. You’ve taken the time to offer great advice and sadly I have stomped on a lot of it. I think my health would automatically improve in some areas if I wasn’t living in an abusive situation. In fact, in the 2 weeks I spent in a domestic abuse safe house, I had a dramatic decrease in symptoms affecting my stomach and less jaw affecting head pain. It was remarkable. I can only imagine how beneficial independent housing will be for me overall! G-d bless you for being affecting caretaker for your father! Not enough adult children are willing to pick up the responsibility. Please don’t forget to also take care of yourself! You seem to be very kind and I wish you and your dad the very kind and best!

      Liked by 1 person

  4. “A soft answer turns away wrath,
    but a harsh word stirs up anger.”
    (Proverbs 15:1, ESV)
    I can’t fully understand your relationship with your father, but I agree with Tessa’s advice. If a doctor could somehow speak with your father, in a calm, warm, but firm way, I pray your dad would understand the seriousness of the situation.

    Also, maybe speaking to your father in a way that lets him know, first of all, that you truly do appreciate everything that he does, may help greatly. Whether his feelings of “everyone being ungrateful” have substance to them or not, approaching him in a warm but serious way, and wanting him to know the fullness of your appreciation for all that he has done before you delve into what needs to be done now could go a long way in him hearing you out. You may have already tried this, but I thought I would mention it.

    “but to those whom God has called, both Jews and Greeks, Christ the power of God and the wisdom of God” (1 Corinthians 1:24, NIV). I pray that you would seek His advice and wisdom! Jesus bless you.

    Liked by 1 person

      • I’m sorry, I’m just now seeing your reply to my comment! But praise Jesus– it truly is all Him!
        My dear Dani, I just now have been able to read your newest blogposts. I am so sorry for the stress you are under.
        Christ has been showing me that truly, I need to trust in Him and Him alone for the stressful things in my life. He gave me all that was needed when He died on that cross, and rise again three says later… that it is not a matter of striving or trying “hard enough,” in my situations, but of trusting and resting in Him, following His lead and allowing Him to empower me to do the things He’s called me to. “Remain in me [Jesus], and I will remain in you. For a branch cannot produce fruit if it is severed from the vine, and you cannot be fruitful unless you remain in me. Yes, I am the vine; you are the branches. Those who remain in me, and I in them, will produce much fruit. For apart from me you can do nothing. Anyone who does not remain in me is thrown away like a useless branch and withers. Such branches are gathered into a pile to be burned” (John 15:4-6); “Then he said to me, ‘This is what the Lord says to Zerubbabel: It is not by force nor by strength, but by my Spirit, says the Lord of Heaven’s Armies'” (Zechariah 4:6).

        There is freedom, rest and victory in Jesus, my friend. I will continue praying for you, that you would be given the freedom you have been desiring. ♡♡

        In Christ,
        Annalee 🙂

        Liked by 1 person

  5. I think of using mobility devices as allowing me freedom, conserving my energy so I can do things I need to, making the world more accessible, and freeing me from isolation…..For me it was an easy choice because it allowed me to do normal things even if I were viewed as abnormal. Some friends didn’t like seeing me in my scooter. It was ” hard” for them. But their feelings over my illness were not for me to coddle or console. If I am accepting of the need for a mobility advice then they should be overjoyed with me and for me. It is very hard to depend on others. I cannot drive. I cannot load my scooter in the car. There is a fine line in appreciation and gratitude and having to beg. Someone that loves you will want to help and if they know you respect their own limitations and show gratitude there is no reason why you shouldn’t be validated in your need to be helped.

    Liked by 1 person

    • Wow. You quite literally said all the things I haven’t been able to put into words! Using mobility devices also allows me to have more freedom and greatly helps keep my pain level and joint damage down. When I use the wheelchair out and about, I can do so much more at home! Since the house I’m currently in can’t be set up with ramps (it has been deemed too steep to get out the door), I can’t use my power wheelchair, so I’d need to be pushed in the manual chair, but I’m either afraid to say that to friends or they’ve showed their discomfort with the whole thing. You’re right, though. My right to do the things they do, but with an assisting device is more important than their discomfort or fear. I’ve long gone past appreciation and have to beg or feel indebted to them even with my own father. I’m especially hurt to see them rush to see hold a door for someone or help them in some way, but make make no effort with me. I’d love more than I can express to just have a friend or family member offer just once! I hate that I’m left out a friend it’s not because I cant, it’s because they won’t. Despite my extremely limited income, income I’ve income I’ve considered paying someone to drive me to do errands and push my chair! I don’t know what more I can do…..

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