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    • #16479
      Amanda
      Keymaster

      Caregivers, how are you and your pALS doing?  It’s been a crazy 6 months between COVID, natural disasters, politics just to mention a few issues we’ve been dealing with.  Being a caregiver is stressful enough without all of these “extras”, so let’s do a check in. How are you?  What have you been doing to take care of yourself? What recommendations can you give to other caregivers and pALS?

    • #16486
      Amanda
      Keymaster

      I was hoping our caregivers would check in and start a dialog.

    • #16992
      Diana Hosner
      Participant

      When I first came to this forum I was listening to stories of people who had cared for their pals for years. I read, I studied and cared and cooked for my husband. They couldn’t put in a feeder tube because his oxygen was messed up, they said they could put him under but couldn’t bring him back.  I used ensure for the bases of many smoothies the weight just kept falling off. Eight month since diagnosis I was walking him back to bed and he said, I have a premonition that I’m going to die today. 7 hours later he did.  We did donate the organs they wanted for research. I pray with that there maybe something they can find to help someone else but I just feel lost.  We were married 50 years.  I’m the sickly one he was my caregiver why did things change? I’m sorry I’m rambling. I just hope his loss opens the door to someone else surviving.

    • #17014
      Dagmar Munn
      Keymaster

      Diana, I am so sorry you lost your husband to ALS. You certainly gave him care filled with kindness and love. And, we all appreciate and thank him for donating his organs to research – – they will help make a difference.

      We will count on your valuable knowledge and experience as a caregiver to help other caregivers in this forum. Please check in often to offer your tips and suggestions to their challenges. And, do check-in and let us know how you are doing. We all appreciate you!

    • #17277
      Annie
      Participant

      My brother has been diagnosed since last January and now he is completely in wheelchair. Recently he is not able to sit up when given a shower and keeps sliding down which makes it not only risky that he would fall but very difficult to give him a shower. Anyone has any suggestions as we are afraid that we will not be able to give showers?

       

    • #17354
      Lori Skjong-Nilsen
      Participant

      Hi Everyone,  I’m new here.  My husband was diagnosed on October 24.  We are slowly grasping the reality of his illness.  I don’t know what to ask or how to answer questions from others.  I’m just grateful this community exists.

       

      • #17355
        Amanda
        Keymaster

        Lori,

        What you are feeling and thinking are completely normal for the situation you and your husband are experiencing. It is a roller coaster of emotions for the both of you and your loved ones.  Many people are not familiar with ALS and will not know much about the disease. They may say things that make you scratch your head like, “We hope he gets well soon,”  or “We are praying for a speedy recovery.”  Please don’t feel obligated to explain ALS unless you would like to help your friends understand. Of course with family members we have different expectations and obligations. First and foremost, take care of your husband and yourself.  When you do find the opportunity to share information about ALS, just share what you are comfortable discussing. Some people find it easier to give brief information and refer others to a website or video.

        Please know that you can come to the forums and post questions, concerns and thoughts. Our community is amazing and very knowledgeable. We try to keep an optimistic outlook and encourage pALS and caregivers to stay/get as healthy as possible both physically and mentally. We also try to keep the information we share factual and researched based.

        Thinking of you and your husband.

        Amanda

    • #17358
      Roxanne Kusske
      Participant

      My husband was diagnosed in August of 2019.  He made his 55th birthday and Christmas, but he doesn’t think he’ll make it through the winter.  I think he’ll be around for at least another year, but he keeps getting weaker and weaker.  He refuses to have a feeding tube or breathing machine, and just wants to go naturally.  He doesn’t have a need for those things yet, but doesn’t want to prolong any of this.  So it’s hard to try and keep his spirits up sometimes, and it’s hard to keep going with a smile on my face for him, but I do because he would give anything to not have to have me help him, to not have ALS.  The other day he had a dream that he got up and walked across the living room floor; I almost broke down crying then.  But to answer your question, I take care of myself by getting my nails done every 2 or 3 weeks, by always having projects to do around the house, and my husband and I have been going through all of his things and giving them away a little at a time, to friends and family.  I want him to have a say in who gets what, and getting this done now will make it easier for me when he is gone.  We have been married 32 years.  My daughter is pregnant with our 3rd grandchild due in July, so I’m excited but my husband, well he doesn’t think he’ll be around.  It’s very depressing sometimes, but I tend to be a bit of an optimist, which seems to help me through all of this.   Oh my goodness, now I’m rambling!  Thx for letting me vent!  🙂

    • #17359
      Kathy stitz
      Participant

      Hi Lori,

      I’m so sorry that your husband was diagnosed with ALS a few months ago.  It is very overwhelming, depressing, and devastating to get this diagnosis.  I was diagnosed in June 2020 and have had a lot of difficulty in coping with it.  It has been hard for me to have a positive mindset.  I have been grateful for these forums.  It is a place where those who have ALS as well as their caregivers can help and support each other.  I agree that at the beginning you don’t know what to ask or what information you need to know.  There are many different topics relating to ALS where you can post comments or questions.  Dagmar and Amanda are excellent moderators of the forums.  Caregivers like you need support as well and I hope you will participate and share with people who will understand what you are going through.  Best wishes to you and your husband.

      • #17390
        Lori Skjong-Nilsen
        Participant

        Thanks, everyone for the kind responses.  I am glad I have all of you to lean on.  I will need it!

         

         

    • #17370
      Brad
      Participant

      My PALS was just formally diagnoses with Bulbar ALS back in mid summer, but it was suspected for almost a year now. Still fully ambulatory but with a PEG tube (unable to swallow anything), very difficult speech issues, and deteriorating respiratory system but with only NIV respirator. She still can walk level over 2 miles, quilts and reads voraciously. Best of all, she wakes up each morning with a smile on her face, an “I Love You”, a steady stream of email, snapchats, etc, and it continues throughout the day. She is a person of faith and has many emotionally close (but physically distant) family who support her by phone and social media.

      In spite of knowing of the challenges and the fate she faces, we are determined to face them together and are more in love than any time in our 52 year marriage. She is literally an “angel in waiting”.

      So in short, love conquers stress (so far).

      • #17900
        Amanda
        Keymaster

        @ Brad,

        Your pALS sounds amazing and she is very inspiring. She has a wonderful attitude and I’m sure that makes her life more enjoyable.   I’m glad she is still able to quilt.  My mom has been teaching me. I’m sure quilting brings her much comfort. Please keep us posted on how things are going.

    • #17375
      Linda
      Participant

      My sister was diagnosed last January and is progressing rapidly.  She is completely non-ambulatory.  I’m with her from Sunday to Thursday afternoon.  When I leave, we have caregivers from Home Instead in Indianapolis step in.  I spend my “off” days catching up with my hubby and just resting.  I have to admit to being exhausted and suffer with bouts of depression.  However, that in no way compares to what my little sis is going through.

      • #17899
        Amanda
        Keymaster

        @Linda,

        Your sister is lucky to have you in her life and as her caregiver. I’m sure she appreciates everything you do. You are both in unthinkable situations. If  you need support please know that our online community is at your fingertips.  We have a wonderful group of people and they are very knowledgeable.

    • #17890
      Aloha Frank
      Participant

      In response to a recent post about living with this dreadful disease, I realize everyone deals with it in their own way and that is how it should be. Most of the posts I see talk about hope for a cure, but I’m a realist. Every day I sit at my computer and review the latest information I can find about ALS in general, including potential new effective treatments (still nothing in sight), current surveys, and input from ALS patients from around the world. The other day I noticed a recent survey that reveals military vets with ALS are more than four times as likely to commit suicide than veterans who do not have the disease. I’m not surprised. This disease destroys any hope of recovery, leaving patients with near zero ‘quality of life.’ Why would anyone want to continue living in such extreme pain and suffering, knowing that it will only get worse with each passing day? I have been suffering with ALS for over a year now with the debilitation and aggravation that comes with. Personally, I would prefer to die as soon as possible, peacefully in my sleep, hopefully. This hideous disease continues to destroy every aspect of my body, forcing me to rely on others to care for my every need, a burden they do not deserve and should not have to endure. I am not ‘living,’ I’m merely existing, sitting in my chair day after day waiting to die. Why prolong the inevitable in this horrible condition? Suicide is not an option for me, but I would be happier and much better off if I died peacefully in my sleep tonight. I understand how others have a completely opposite point of view and strive to live with this terrible disease as long as possible, hoping against all hope that a cure may be just around the corner. I admire their determination and resolve and wish them well, but this ‘life,’ such as it is, is not for me. I suspect I am not the only ALS patient thinking this way. Meanwhile, I’ll ‘hang in there’ as long as I can for the sake of my loved ones and continue to make the best of it, but in truth I’m tired and ready to let go, the sooner the better.

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