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)

Mother’s Day Blessings


Frances and Brad with the quilt she made him. Christmas 2012.

Frances and Brad with the quilt she made him.               Christmas 2012.

Lately it must seem like I am really down and a little depressed. I think I feel those things at times and I think it is completely understandable and completely normal under the circumstances I am living through during this stage in my life.

But I also want to share the moments that I am overtaken with happiness, gratitude and amazement.

There are times when good people do simply wonderful things for others that are never spoken of and never repayable.

We have an amazing friend. She used to teach Frances in elementary school. We became friends outside of the class. She is kind and sweet and I have often wished I were more like her (patient and beautiful; just not fair.) Both kids adore her. THREE weeks ago she had her second baby. THREE WEEKS AGO. Today, she brought both of her children to pick up my children so they could go pick me out something for Mother’s Day. So, let’s be clear here. This completely insane and awesome lady had FOUR children with her going shopping for someone else. How easy would it have been to think about it and say, “that would be nice to do but I just had a baby and it would just be too much.”? No one would have blamed her or would have known any different. I have tears in my eyes as I write this. Who does this?  Who takes makes the time, makes the effort, follows through with the plan and does it all with a smile and a hug and a “no worries. I wanted to and I really enjoyed it.” ????

This world we live in is filled with hate and violence and anger and very bad things that are happening all the time.

But this world we live in is equally filled with compassion and support and love and unselfishness.

It is so easy to lose sight of all the good that comes our way. I write about our saga, our journey, and it sometimes seems like there is not only no light at the end of the tunnel, but no end to the tunnel.

Somehow our family is  blessed in the midst of such sorrow. Someone miraculously does a small deed that is HUGE to us. HUGE. I hope those of you reading my words are able to think of someone you know who may need a small, tiny favor  and you are able to help them. Whatever your actions are, be assured that you will make an enormous difference to them. The reward you will reap and the difference your actions make are guaranteed to be well worth the energy you will expend.

Mother’s Day is just two days away. I have already had the best Mother’s Day just by realizing how much others care. As a Mom, I am fortunate beyond measure. My children are what keep me going. My children though are loved by many. They have grandparents, neighbors, teachers, coaches, friends and family that love them and look out for them. I know that if I can’t be there for them, someone will step up and will be. I am comforted and eased by this knowledge. I am relieved to know it not only takes a village but we have a village.

Thank you friends. Thank you teachers. Thank you coaches. Thank you neighbors. Thank you for being surrogate parents for us to Frances and Brad. Thank you for easing my load and for giving me that peace of mind. Thank you for caring about our family. Thank you for being much better than what the news would have us believe.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (2)