The Next Phase is Here.

Screen Shot 2015-09-04 at 1.10.45 AMI have started and stopped this writing numerous times. Too many to count. I’ve, no, WE’VE all known it was coming for a long time, but we didn’t talk about it. We hemmed and hawed and left it unspoken and hanging over us like the chill that comes with the first frost; so unexpected you are able to fein surprise although it re-occurs like clockwork each year.

Yep, you can see to the bottom right of this writing a new widget. A place to click. A place to give. A place for us to take. And if ever there was a time I was full of mixed emotions, this would be it.

Over a great length of time, we have had several people offer to help us fundraise. I have been flattered and a little surprised, but have held off. After all, there are always others in need and I have always felt there is a time we will need more help and if I can just figure out a way we won’t need any.

Over the past three weeks Jim has been in a locked memory care unit to allow myself and the kids a respite from his care. And let’s be honest, we haven’t even been caring for him as long as many others have. But, our family was under a great deal of stress and the walls were crumbling and I saw a source of support that I latched onto for dear life. And it pains me a tremendous amount to announce the three of us have witnessed something we didn’t expect or want to admit….life and “normalcy”. What a cruel woman and wife I am to say such a thing. But I always have promised to be honest: we found ourselves able to “be”. Be relaxed. Be loud. Be late. Be early. Be silly. Be happy. Ouch. The last one really hurts. It feels as if we are somehow vilifying Jim or ostracizing him in some way but we aren’t. We are trying to live as he declines. By doing this, we are carrying on as he wishes but even that knowledge does not erase the sting from feeling as if we are abandoning him or that he is forsaken.  Just the opposite.

While at this facility, not only have we been able to breathe easier, Jim has been happy. He has a simple life that remains constant and without interruption to his schedule. That is what he needs and being in our home makes this almost impossible. His new self needs quiet and peace which doesn’t happen often in a home with active children. Plus I worry about him on the stairs since we do not have a bedroom or a full bathroom downstairs. And I worry about him walking out the door. And I worry about him eating or drinking something he shouldn’t, hurting himself with a tool or  knife or something he would be able to use simply in the past. I hadn’t realized until he wasn’t with us how much I worried. And the kids have noticed too. Recently we were discussing all of this unforeseen change and they both agreed I am happier and not as stressed all the time. Another ouch and another not so proud Mom/Wife moment.

I sat and watched our wedding video for the first time the same night our very good friend, to whom I will forever be indebted, started the GoFundMe Page to raise money for Jim’s care. I cried. I laughed. I reminisced. By myself. There were guests there who have since passed. Couples now divorced. Images long forgotten through the years of marriage and children and life. And there was Jim. My groom. So proud. So handsome. So, so perfect….

This is all just a huge mess. I don’t want help. But we need it and I have run out of options. I have fought asking for anything for a long time and it wasn’t until a conversation I had recently with someone who went through losing a wonderful husband to Alzheimer’s said to me, “Karen, I would rather give to your family and know I am helping you than to anything else. You have exhausted all of the ways you thought you would be able to get help and there isn’t any help for you. We all know you have tried and that there isn’t anything out there. You don’t have a choice. You cannot possibly take care of two children and Jim. It isn’t fair to any of them and it isn’t fair to you. Let others help. Trust me, they want to. Many want to but don’t know how and with it being an organized way for them to give, I really think they will.”  I thought and thought about her words. I cannot express the gratitude I have to her for saying them, nor can I express how much I really don’t want to be in this position.

Yet, the world never ceases to amaze me. The support that has come forth is truly remarkable. We have already raised enough to cover care for Jim for one month! Obviously, we need much more, but wow! I am so humbled, so moved and really, for a rare instance speechless.

There are so many others who need help and I feel guilty for possibly taking something away from them. I lay in bed thinking about this. Thinking to myself that if I can figure out a way to take care of Jim, others can receive the aid and help I would receive. And I am so sorry I haven’t figured that out yet. But at the same time I have become desperate and see no other way. So thank you for your support and for your very kind words. Thank you for the stories of Jim. One friend posted on her Facebook page a story of how Jim installed their car seat when their oldest son was born because her husband was deployed. I had completely forgotten this and it was a reminder of how much Jim always did for others. In the throes of this complete and utter quandary I often forget just how handy and giving and genuine Jim was. It makes me sad to remember him from years ago, but it also makes me proud to be his wife and to be charged with his care. He trusts me and I trust that we will not be forsaken.

If you can give, please do. If you can’t, please know I understand and all I ask is for you to share this link with your friends so maybe they can. The more who see our story and our plight, the better the odds of us receiving enough to make it through.  THANK YOU SO VERY, VERY MUCH.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (19)

19 Responses to “The Next Phase is Here.”

  1. Kerry says:

    I was hoping that something would be set up for you if you needed it. I wondered how you were doing it. It financially devastates families. I am doing the walk to end Alzheimer’s soon to honor my dad who died of Alzheimer’s. I have raised some money for that. But it feels just as important to me to help you and your family too. Through your blog I feel as if I know you and I am deeply sorry for your pain. And you are not cruel at all. Just very honest and very human. I believe in the power of prayer and will pray and donate and share!

  2. Jeri says:

    Isn’t Jim getting social security disability benefits? Two years after those benefits begin, he’ll automatically begin receiving medicare. There is no age requirement on being disabled.

    • Karen says:

      Jeri, thank you for always being so supportive and offering help. Jim did switch over to Medicare at the two year mark just as you said. But Medicare does not cover the care he needs now.

  3. joan says:

    wow! Karen sorry Jim has advanced to that stage.And you are still raising children.My husband has been diagnosed 3 years and has declined to 5 on his most recent MMSE.So I figure my time will come soon too.
    I guess it’s a relief but bittersweet as well.
    Keep writing so we on this journey also can relate.

  4. Lee Ann says:

    Remember when you and Jim agreed that the most important thing is taking care of the kids? I know its kind of a difficult thing, but you know Jim would be pleased to know that you and the kids are relaxing a bit. You’re not dying. You have to live. You have children to raise. Its not your fault. So don’t feel guilty. What would you expect Jim to do if it were reversed? People with dementia thrive on routine. I am sure everything will work out for all of you.

  5. Anne says:

    Karen …. Bravo for asking for help! You are different from the majority of care takers, you have young children. They must be the priority and they must have a happy, healthy home life. Let go of the guilt, you have done an outstanding job. Add to that you KNOW what Jim’s wishes are. God bless you!

  6. I send you a big hug. Thank you for showing me how to help in my small way. I shared with a note. Lovingly, Deane J

  7. Maureen d. Connolly says:

    In New York Medicaid covers full time home care. Does it vary from state to state?

  8. There are no words needed from me. You know this. We are sisters in a very small sorority…

    RE medicaid question above, yes the laws vary from state to state. Medicaid is administered at the state level. The qualification can be difficult if it is not planned well in advance. If you have a loved one with Alzheimers, please consult an elder law attorney for help. It is a challenge. People with minor children sometimes can get some special treatment, as my daughter and i have. We are grateful. My husband is in a locked dementia specific facility for almost 4 years since our daughter was 8. We are blessed with considerable support which allowed me to get back in my feet. Its a long road ahead for Karen and the kids.

    You will make it, and life will become normal after some time. We are starting to feel like our heads are above water most of the time now.

    • Maureen says:

      Thank you Laura for the clarification. Yes, it does take proper planning. I am grateful for the ability to keep my hubby home knowing down the road i will be able to get the help we will need.

  9. Kelly says:

    You have been and continue to be so very strong. I read your posts and blog regularly and I am very thankful you take the time and make a priority to share the way you do. This is the bravest thing I have seen yet. Asking for help is DEFINITELY one of the more difficult things to do as a caregiver. We are overcome by the notion that we SHOULD be able to handle anything and we can near kill ourselves trying. Donating to your fundraiser is in reality more like paying a modest price for much needed counsel. Your experience and commitment to the cause are invaluable. Thank you!

  10. Connie Howard says:

    What kind of help will you get from the VA since he was in the military?

    • Karen says:

      Connie, I don’t know if you have seen my previous postings and writings, but I have discussed the help we have tried for unsuccessfully, including the VA. Many believe we will automatically receive help from the VA, but because the Younger Onset Alzheimer’s is not service related, we currently receive no help from the VA. I have met with them numerous times, my attorney is in contact with them, as is our Senator. I am awaiting word on any assistance we might possibly be able to get, but have gotten nothing yet other than the 30 day respite he is finishing up this week. If we receive word of any help in the future, I will relay such great news with you and all of the wonderful readers who have been so supportive.

  11. Ann says:

    Karen, I’m proud of you – I *know* that asking for help is one of the most courageous and difficult things to do. I’ll continue to share your story, the Go Fund Me link, and of course, I’ll continue praying for you, for Jim, and for the kids.

  12. Donna Cole says:

    How is Jim’s combativeness? Have they found meds that help?

  13. Donna Cole says:

    I’m so happy to here that. My Alton was also diagnose when he was 50. He is now 57 and in the latter part of this terrible disease. He has been in three different homes since April 2015. He currently in the hospital until we find placement for him. Sad to say he has been committed to our State Hospital because no one will take him. Let me tell you some things about my Alton. He served as a deacon in our church, taught Sunday school. Sang in the choir. Coach and played softball. He was smart a loving. We were high school sweethearts. We had a beautiful life until April 9th 2009. We will be married for 38 years this October. I pray for you and Jim. I asked that you pray for me and Alton. Much Love Donna

  14. Julie says:

    I am an Activities Coordinator for a memory care facility and I want you to know that you are not alone. Respite care is to help your husband and your family. Since being there, as much as you can and have possibly done, he is safe, there is structure, there are activities designated for engagement and other Montessori activities that he seems to be adjusting well. Some families have bonded and built new relations. You need to be able to sleep peaceful at night knowing that he is safe and comfortable. I am on my phone and reading all of this hard. I worked at a private pay facility, so I have seen the financial challenges. I will look into any opportunities for you after I read more. Xo

  15. Donna Cole says:

    Was Jim a wander?

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