Not signed in (Sign In)

Vanilla 1.1.2 is a product of Lussumo. More Information: Documentation, Community Support.

    • CommentAuthormidwestmn
    • CommentTimeOct 8th 2012
     
    He has had this for so long, and this blog is about the only place where I have aired my impatience about his sickness. And it has felt good. But he may go in on Friday or Monday and
    I am feeling like my heart is going out from my chest.. For better or worse he's been my companion for 56 years. Have I wasted all this time not realizing how much he means to me? Love is not perfect, but what is it in us that makes us think it should have been? I actually think he is looking forward to going. I hope that will make it easier for both of us.
    •  
      CommentAuthorNikki
    • CommentTimeOct 8th 2012
     
    awwwwww midwestmn, it is so damn heartbreaking! My heart goes out to you ((hugs)) Perhaps once you place him and you aren't bogged down with the day to day struggles, you will be able to savor your moments together and feel the love again. This is what happened to us and it has been my biggest blessing. I pray too that the transition will go as smoothly as possible. We who have gone down this road before you feel your pain and are here to help you ♥
  1.  
    midwestmn,

    Starting in mid 2011, on recs from neurologist and care manager, I started planning for H's placement. Overshadowing it was his refusal. It was not until paramedics were called here in an emergency situation that it became clear that he could not come home again and so began placement which was from hospital to rehab to alf.

    None of this is close to perfect, and there are so many stories here; like Nikki's above that share strength and wisdom. Wishing you the best, I hope it goes as easily as possible for both of you.
  2.  
    midwestmn, I am sorry that you have come to this fork in your journey. My prayers are with you for strength as you go thru this. He knows that you love him. Please let us know how it goes.
    • CommentAuthorLFL
    • CommentTimeOct 9th 2012
     
    midwestmn, I know how you feel although I've not yet truly been in your shoes. DH's journey was jail, hospital (1 mo), alf. That was right after dx. The preceeding year before was an emotional hell for me, but when he suddenly was no longer home, I cried hysterically for days. I too wish you strength and hope the transition goes well for you both. We have so many spouses who've been through this and have had sucessful outcomes.
  3.  
    midwestmn, how I understand your heart going out of your chest. Mine has been doing that too. Though I have seen that placement could possibly be a better life for both of us, I just cannot make that decision yet.

    And you comment on love not being perfect, why did we think it was, I feel, is a very profound and deep statement, it covers a multitude of scenarios.

    It is so good to read of your thoughts, and all of you, to see that we are really not alone, we are one big human family.
  4.  
    Coco is right you are not alone!! I think we all have hearts that are breaking,some more than others but all wishing for our LIVES to be OURS again Instead this AD devil controls most of us!
    •  
      CommentAuthorJudithKB*
    • CommentTimeOct 9th 2012
     
    My heart goes out to all of you that have to worry about the decision to place and where to place and when to place. It is such a heavy burden. Coco...is Dado still falling?? I hope not or at least not as much. Maybe
    when your friend comes the first of the month you will feel better.
    • CommentAuthormidwestmn
    • CommentTimeOct 9th 2012
     
    Thanks you and bless you all! It has been a balm and comfort to hear from you. The next few days will be full, so I might not get back to tell you how it went for a while.
    • CommentAuthordeb42657
    • CommentTimeOct 10th 2012
     
    I have heard that so many times midwestmn, when they go into the NH and you go visit them or talk to them on the phone you gain some of that love back and I am just a few days behind you in placing my DH and that is something that I am looking forward to. Becoming his friend again. I don't know if we could actually fall in love again but I do think that the relationship will be better!
  5.  
    Hey JudithKB thanks for asking about Dado.
    No, he is not falling as much. Still stumbling and unsteady with the occasional fall. He is taking the same meds so I just don't get it, that issue that lasted for over a week was INTENSE, falling so hard right on his face, three to four times a day.. Who knows what was happening, no one does.

    Now he is steadily declining mentally. His new thing is a big sob when he cannot move his legs, and then a lamenting, "Something wrong, something wrong" At first I could not take it, now I am actually getting used to it.

    I am in limbo on placing, have all paperwork in order and just need to fill it out. I must be nuts, he is so hard to take care of and I am a wreck. When will I learn, how will I know. God it sucks.
    •  
      CommentAuthorJudithKB*
    • CommentTimeOct 11th 2012
     
    Coco....you will know if and when it is time. You sound just like the situation I was in knowing that I couldn't continue on taking care of Jim much longer, but not knowing where I would want to place him. For me, it
    seemed like placement would be harder on me then taking care of him at home. I would want to go see him
    every day and spend time with him, but if I kept him home I could at least sit down and rest in my favorite chair and I didn't have to worry about what was happening to him in a strange place. Of course, if it became just too difficult for me, then I would have placed him. You are stronger then you know. I say, if you don't know....do nothing different...because when the time is right...you will know. One day at a time. It is more
    difficult to place someone that is not threatening to you or being mean....so there are blessings in every
    situation...try to find them. You are strong....Your friends are here and we are giving you hugs.....
  6.  
    It was two years ago today that DH was placed and I had no idea what lay ahead for us. That was probably just as we'll, because I wouldn't have believed that the strength to deal with all of it would have been there.
    •  
      CommentAuthorJudithKB*
    • CommentTimeOct 11th 2012
     
    Yes..prisR...isn't it amazing how much reserve strength most have when it comes time to place or face
    the final days of our spouses? Most of us under estimate ourselves. We rise to the occasion and do what has to be done for them.
  7.  
    midwestmn, please keep us updated. We are here for you.

    JudithKB, if I did not have to work to help with bills, I would likely stay home. As it is now, I have 4 to 6 months to survive with my sisters legacy. (we of course still get his SS income) I am trying...to not worry...to just observe and LIVE for a few months and not look past that time slot.
    •  
      CommentAuthorJudithKB*
    • CommentTimeOct 11th 2012 edited
     
    It is even so difficult without financial concerns and so sorry you are burdened with both. Your work is important to you from the stand point it gives you
    exposure to other humans. Boy, do I understand that and how badly that is needed. You will continue to be in my prayers and that you will know what to do when the time is right and necessary.
    • CommentAuthorElaineH
    • CommentTimeOct 11th 2012
     
    midwestmn & Coco, I know exactly how you feel, because I was experiencing those same feelings a few weeks ago. Everyone around me including my kids knew that it was time to place him & everyone has told me that I went above & beyond what I should have. I also thought, ”have I wasted all this time not realizing how much he means to me? “ Well it's so hard to “love” someone who is aggressive towards you. My “line in the sand” was his violent outbursts & the stress I was feeling the last month. I knew that I couldn't live like that too much longer. I was fortunate that I had turned in all the paper work to the local Veterans Home because I was planning on placing him there for respite for a few days. Now I just have to figure out how I am going to pay my share of the bill after Medicare pays theirs.
  8.  
    You will find a way Elaine! Hoping you and Tom are both doing ok. Medicare only pays for so long then they stop-is that right?? Let us know how you all are doing.
    • CommentAuthorxox
    • CommentTimeOct 11th 2012
     
    Elaine, have you seen an ElderCare attorney. They assist in helping you put your husband on Medicaid while preserving as much financially for yourself.

    Medicare does not pay for long term nursing home care. They pay for up to 90 days of recuperative/rehabilitative nursing home care. Medicaid pays for nursing home car. With the VA and Medicaid the rules vary in every state (and change every year). Some people have reported having Medicaid and VA pay for care, others that VA paid for everything. Some people said that the VA paid based on income, others income independent. Since you are looking at a Veterans Home a local VFW might be able to provide free advice or direct you in the proper direction.
    •  
      CommentAuthorJudithKB*
    • CommentTimeOct 11th 2012
     
    Most of the VA payments are different for different Vets because of when and where and how long they
    were in the service and if their condition they have is service related. I don't really know, but I don't
    believe the VA pays different in different states, I believe it is based on the Vets' service record. I have
    had a number of people ask why my dh got so much help from the VA...it was because he had exposure in Nam
    to Agent Orange that made him subject to Congestive Heart Failure....and that was actually the cause of his death. He could have gone to any area in the country and gotten the same care if it was available in that
    given area. I did a lot of research on what was available through the VA and never once did anyone ask
    me what State we lived in...it was basically the same for everyone depending on the number of people the
    VA had working in a given area as well as the facilities they had available.
    •  
      CommentAuthorJudithKB*
    • CommentTimeOct 11th 2012
     
    Elaine...do you have a VSO working on your behalf....if not you probably should look into it. They will know what is available....Like paulc said, call the local VFW and they will tell you who the Verteran's Service Officer (VSO)
    is in your area. They have been trained and know what is available.
    • CommentAuthortexasgirl
    • CommentTimeOct 13th 2012 edited
     
    My experience with getting any kind of compensation from the VA has been awful. My DH was in the Navy during Vietnam and exposed to agent orange. i filed a compensation / pension benefits application in JUNE 2010 and the VA STILL HAS NOT SETTLED the claim. I am working with a counselor from the Disabled American Veterans, but it is still taking forever. DH went on HOSPICE early August 2012 because of a 55 pound weight loss since January 2012 so I provided the hospice documents to the DAV counselor to forward to the VA, but it still has not sped things up.

    Although I provided all necessary medical documentation in 2010, the VA sends us a letter every few months stating they have requested medical records and if I have any, I should provide them. DAV confirmed I have already provided documents required for the VA to settle the claim. DAV said not to send anything more as each time additional documentation is sent, it delays the claim even more as it goes back into the review stage. I even contacted Congressman Culbertson but all they did is tell me the VA is working on it . I already know this!

    I sure hope those of you pursuing VA Benefits have better luck than I have.
    •  
      CommentAuthorJudithKB*
    • CommentTimeOct 13th 2012
     
    I have had some experience in dealing with the VA and claims for compensation. Hope what information I can give you will be of help to you. First, I know very little about the help of the DAV...however, I do
    know that the VSO (Veteran Service Officers) are trained and paid to provide Vets and their families
    information regarding any and all compensation of service connected disabilities. The VSO we had was
    excellent.

    1. You said your dh was in Nam and exposed to Agent Orange. First, what medical condition does he have regarding the exposure to Agent Orange? Just being in Nam and claiming exposure to Agent Orange, is not enough...your claim would need to provide what medical condition he has as a result of Agent Orange?? There are about 10 different conditions that have been approved for exposure to Agent Orange. If your
    dh does not have one of those conditions your will have to "prove" why you believe it was Agent Orange
    that caused his medical condition and that is not an easy thing to do.
    These claims are on a fast track and should be processed much faster then other claims. A VSO could
    get this done for you. Call your local VFW and ask for the name and telephone number of your VSO.

    2. The VA just basically pays compensation for medical conditions that are a result of their military
    service and you have to prove that the medical condition was a result of their military service.

    3. You didn't say what medical condition your dh has that was service connnected. Maybe you don't want to say and that is OK too. But, if it is not service connected you will be placed on the back burner and have
    to prove why you think it is service connected. That is very difficult to do...but, a VSO can give you an evaluation of what your chances are and help move your claim along.

    4. If it was service connected you should have heard from them by this time and they should have sent
    you to one of their contracted doctors to evaluate the condition.

    Hope this can help you some.