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    Feeling sad about the future.

    I have been having a rough time lately. My disabilities are getting worse. I am probably in secondary Progressive now. I still do my Copaxone and have tried many others. To top it off my husband has Alzheimers and I just do not know what our future holds. I trust in the Lord, but some days it's just so hard. I can no longer walk and have trouble with dressing, bathing, etc. and my husband is older and is declining with the Alzheimers. I have to repeat everything several times and help him with everything. He is very loving and does what he cans. His children and my sisters and brother are all busy about their lives. I don't know how much longer we will be able to take care of ourselves and we don't have much to afford a nice assistive living place. Just feeling blue and scared.

    #2
    Home health?

    I have only been diagnosed for 3 1/2 months....I am a baby in this MS mess. But if I could offer any advice, I did home health for many years and is there any way that home health could come and at least help you bathe and get dressed? In my state they can also help around the house. Most insurances and especially Medicare will pay for it. I know it's not much, but could maybe relieve a little of the strain.

    Comment


      #3
      I am so sorry. I am adding you to my prayer listing

      I am so sorry. It is different than we dreamed our future would hold for us. I am in a similar situation. We are having something simple, our clothes washer repaired today. But it's not so simple, yes it's still under warranty, but it's been an entire week with no clothes washer.

      I know it's no big deal, but when we get used to having something, it's hard to deal without it. I think my husband of thirty nine years, forgets that we are a team. I don't know why he thinks we are on opposite teams. He is not the same person I married. His dad told him to get a divorce when I was diagnosed with MS and Lupus, because if he waited until I was visibly ill, it might damage his re
      reputation

      Our daughters were in sixth and ninth grades then, so I said no, I didn't want a divorce. Well if it hadn't been for our daughters, it would have been a totally different answer. So we have been living what you read about, two people living in the same house.

      Our daughters are now twenty and twenty three. This MS and Lupus has totally worn me out.

      I'm sorry, I posted because I want to help you. Now all I've done is complain. It is really difficult dealing with someone, who has no idea what we're enduring. If I could have one wish, it is that no one else is enduring this

      Comment


        #4
        I am so sorry this is happening. Both diseases are horrible and progressive so the writing is on the wall.

        I would urge you to make the difficult choices and arrangements NOW. Waiting until things are no longer bearable or you are unable to make your own choices would be even worse than dealing with it now, imo.

        Best wishes to you.
        He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
        Anonymous

        Comment


          #5
          Ziggy - I agree with Wizardsmom. Do you currently have any home health care services coming to your home? Beyond your insurance, your state may also offer services beyond what would be covered by your insurance -- either specifically related to your diagnosis, or your disability, or your age. For your husband as well.

          Marie - I am sorry to hear about your struggles as well. Have you and your husband ever considered counseling?

          Comment


            #6
            Originally posted by Jules A View Post
            I would urge you to make the difficult choices and arrangements NOW.:
            I'm truly sorry that both you and your husband are going through such tough illnesses. I strongly urge you to follow Jules A's advice, you just never know when either illness will progress.

            My Mum was dx with Alzheimer's at the exact same time I was dx with MS. A social worker at her nursing home noticed the she had no "Continuing Power of Attorney" and quickly assigned me and my sister. Good thing, Alzheimer's progressed rapidly, she passed away just 5 years later.

            I'm in Canada so not familiar with your laws but there must be some document like this one. The "Continuing" part refereed to after she died. We were able to finalize all her final documents quickly.

            This is funny, but not...we still haven't been able to get her birth and death years engraved on her stone and it's been 4 years. For some reason beyond me she put her maiden name, and the name she was known by on the stone when my dad passed in 1986!!! It should say, "His dear wife Martha Walters" and it says, "His dear wife Mattie Hill".

            When the cemetery asked me if I was the plot holder (I said "no"), then asked me where the plot holder is and I told them, "In the plot" all she could say is "Uh Oh"!! There is not a document on the face of the earth that says Mattie Hill", I even contacted the British Air Force, where she served in WW2 to no avail.

            Sorry for this being so lengthy, please get your documents in order. Hope you're up to it.
            Jen
            RRMS 2005, Copaxone since 2007
            "I hope to be the person my dog thinks I am."

            Comment


              #7
              Ziggy --

              Sorry that you are in this boat. You're in my thoughts.

              Perhaps, if you talk with your doctor, there might be meds that can help with symptom management. Possibly nothing, though, that could be done to reverse the progression that has occurred. Unfortunately, that's just life with MS.
              ~ Faith
              MSWorld Volunteer -- Moderator since JUN2012
              (now a Mimibug)

              Symptoms began in JAN02
              - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
              - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
              .

              - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
              - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

              Comment


                #8
                Originally posted by Marie12 View Post
                I am so sorry. It is different than we dreamed our future would hold for us. I am in a similar situation. We are having something simple, our clothes washer repaired today. But it's not so simple, yes it's still under warranty, but it's been an entire week with no clothes washer.

                I know it's no big deal, but when we get used to having something, it's hard to deal without it. I think my husband of thirty nine years, forgets that we are a team. I don't know why he thinks we are on opposite teams. He is not the same person I married. His dad told him to get a divorce when I was diagnosed with MS and Lupus, because if he waited until I was visibly ill, it might damage his re
                reputation

                Our daughters were in sixth and ninth grades then, so I said no, I didn't want a divorce. Well if it hadn't been for our daughters, it would have been a totally different answer. So we have been living what you read about, two people living in the same house.

                Our daughters are now twenty and twenty three. This MS and Lupus has totally worn me out.

                I'm sorry, I posted because I want to help you. Now all I've done is complain. It is really difficult dealing with someone, who has no idea what we're enduring. If I could have one wish, it is that no one else is enduring this
                Marie, sometimes realizing you're not the only one with problems helps. i know you've helped me because i'm feeling almost the same way. hang in there and take care of yourself.

                ziggy, it's heartbreaking that you're both going through such terrible diseases. several have given you excellent advice.
                thank goodness you still have a loving relationship, makes everything so much easier to handle.

                even though kids and siblings are busy, doesn't mean they don't care & won't help. are they aware how bad your situation is? they can't help if they don't realize how much you need it.

                praying that you find the right solution.

                take care & God bless you both!
                "All things are possible for those who believe." Jesus

                Comment


                  #9
                  Marie,

                  I can't believe what a terrible person your father in law is. I just can't believe it. To put his "reputation" above the family and decent human kindness. It will damage his reputation when everyone finds out what kind of a people they are.

                  Comment


                    #10
                    Thanks for the support

                    I appreciate all of your posts. I do have power of attorney. It's just such a painful thing to watch your husband lose his memory. I am just so overwhelmed doing it all. I will take your advice. It's just nice to know that I am not alone and I know that others with MS understand. It helps me to see how others cope. Thanks again and God bless you all.

                    Comment


                      #11
                      Help!

                      Hi I am Ziggy,
                      I see that you're located in California(so am I) and I wanted to suggest that you contact your local MS Society and ask for a referral so that you can see a counselor to help you deal with everything you have on your plate. The MS Society has a sponsored program and they will refer you to several therapists in your area who are familiar with our MS issues, including family dynamics. You choose the therapist from their list and the cost is paid by the MS Society. In my case, I ended up seeing a wonderful therapist from Jewish Family Services (no, I'm not Jewish but they help anyone) who helped me a great deal. It's a start and you have nothing to lose!

                      Comment


                        #12
                        Thanks

                        Originally posted by LilyClair View Post
                        Hi I am Ziggy,
                        I see that you're located in California(so am I) and I wanted to suggest that you contact your local MS Society and ask for a referral so that you can see a counselor to help you deal with everything you have on your plate. The MS Society has a sponsored program and they will refer you to several therapists in your area who are familiar with our MS issues, including family dynamics. You choose the therapist from their list and the cost is paid by the MS Society. In my case, I ended up seeing a wonderful therapist from Jewish Family Services (no, I'm not Jewish but they help anyone) who helped me a great deal. It's a start and you have nothing to lose!
                        I will look into that.

                        Comment

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