Got someone’s back?

Alzheimer's Disease, Early Onset, Friends, Caregiver support, help with caregiving,

Jim and I, Dec 2013.

Have you ever wanted to kill yourself? I have. I have gotten to the point in my life several times where I just didn’t think it was worth it to keep fighting and to keep living.

I was 13. And 14. And 15. Actually, through most of my adolescence I was emotional and unhappy and trying to understand my place in this world.

That being said, I would never kill myself. I have too strong a personality. Plus, I have two parents, a brother, two kids and friends that it would crush, devastate and they would never be the same. I am not that selfish. But I can say there have been times in my life that the only reason I could come up with for wanting to live was thinking about how sad and awful it would be for my Mom and Dad. Sometimes in the continuing circle of life you must endure the part of the circle where you are headed down. The arch of the ring eventually curves up, but not until after you enjoy some downtime. I feel like I am in a HUGE circle, so my downtime seems to be a little longer than normal.

Not too long after Jim got diagnosed, someone gave me the book Still Alice by Lisa Genova to read. I did. And I cried. And I started worrying about Jim taking his own life. I was depressed after reading that book for a solid two weeks. They are now making it into a movie. I probably won’t go see it. Unless I am invited to the World Premiere and have a reason to get out of dodge and dress fancy.

I wanted to share these thoughts with you because I get it. I get that the life of a caregiver, even in the early stages, sucks. Big time. I know there are many caregivers that have thoughts of suicide. But they can’t, because who will take care of their loved one they are stuck taking care of? They think about it and want to. And sometimes they do. Sometimes they also kill the spouse or parent or sibling they are caring for.  There was recently an episode in California where a man with no criminal history killed his wife and sister. One was an invalid and one suffered from dementia. When I read the story I knew. I knew he just couldn’t take it one more day. The police arrested him sitting quietly on a bench at the nursing home where his sister lived.  Read the news article here. I was going to write: Read the full story here, but we all know this isn’t the FULL story.

Until caregivers get more help, these types of instances will continue to happen. Until caregivers are taken care of the same as patients, there will be heart attacks and strokes and depression and an utter lack of fully participating people. I wouldn’t go so far as to say zombies, but the thought did flash through my mind. People not able to contribute to society as they once did or still could. They are overwhelmed, tired, lonely and forlorn. Many times they are financially ruined. Most times they have lost touch with friends, neighbors and have no one to help them. From the moment they wake up until the moment they rest their head on the pillow at night, they are consumed with dementia. They are reminded constantly all day long that the person they are entrusted to care for can no longer take care of themselves and there is no way out. They feel trapped. They feel unloved. They feel isolated and alone. They get to the point where it just doesn’t do any good to cry anymore. They tried that and all it got them was swollen eyes and a headache. The one person they would normally turn to for help or to talk to about having such a problem in their life is more than likely the one that is now causing them such problems. The irony is so bitter, they can taste it in the food, wine, beer, liquor, cigarettes and drugs they ingest each day to make it through to the next. And it continues like this for months. Years. With no help, plan or way to make a change for themselves; depression and bitterness seep in. There is so little time for them to take care of themselves, they gain/loose massive amounts of weight. They age prematurely. They have heart attacks. They have strokes. Their personalities change and their light is whiffed out. Many had careers. They led productive, influential lives. They were the life of the party. Now, they change adult diapers and answer the same questions over and over and pray that it will all go away. It is a nightmare that many live in and few can survive unscathed.

Then the person they have been revolving their whole life around passes away. By now their friends have disappeared, they are no longer working, they are broken and defeated. To add insult to injury they must start new and carry on after paying all of the medical bills and after suffering a loss that has been a long time coming.  The feeling is bittersweet because they are riddled with guilt at the sense of relief that they feel now that they are no longer responsible and consumed with taking care of their loved one with Alzheimer’s. They have actually been looking forward to this day and they know how selfish and wrong and bad that is. But they were so overwhelmed, those thoughts crept in before they could stop them.

Post Traumatic Stress Syndrome isn’t just for victims of quick, violent crimes. I think that term could be used for caregivers that have endured a living Hell for years and then are set free with little help or support or idea of what in the world they are going to do now.

I am here to tell you what to do. Pick yourself up and smile. Into the mirror. Take the 5 minutes you haven’t had in years and just smile into the mirror. First, forgive yourself. Forgive yourself for all of the times you lost your patience. Forgive yourself for surviving. Forgive yourself for feeling relief. Then congratulate yourself for being the strong, kind, loving person you are. Only those types of people can make it through. You did. You deserve a vacation. You deserve a break. You are strong. You are brave. You survived. You might have had doubts and you might think you could have done better, but you did the best that you could, when you could, however you could. Love yourself now. It is time to move on. It is time to embrace the world and re-introduce yourself.

I am no fool. I know my limits. That doesn’t mean I stay within them. I may be no fool but I am sometimes foolish. I push myself. I am hard on myself. I expect a lot of myself. These traits will either keep me going or cause me to end up a statistic. I am not sure which.

Friends are what keep pulling me out of the dark waters I sometimes slip into. My message to someone reading this particular document who isn’t a caregiver, but possibly a friend, neighbor or co-worker to someone who is: HELP THEM. DON’T JUST SAY TO THEM, “LET ME KNOW IF YOU NEED ANYTHING.” They do. I promise you, they do. They are having a hard time accepting help. They are proud. They are lost. They don’t know where to start. Whatever you can offer, whenever you can offer, is a huge help. It doesn’t have to be much. Really. It could be as simple as having lunch or coffee or dropping by to say “hi.”. Are you able to take their loved one on an errand or sit with them for a while? It could be helping with yardwork or just reminding them when something is going on. I know for me personally, I no longer have the memory I used to. It is almost like I have Alzheimer’s too. I used to remember my schedule so well but now I forget so much it is embarrassing. Gasp. Like it would be to have Alzheimer’s and constantly be struggling to remember.  I am so very, very fortunate. I have friends that ask me to lunch. Bring me dinners on occasion. Invite me to gatherings. Help with the kids. Forgive my new personality that takes over sometimes when I least expect it and I am pretty sure when they least expect it. Without my friends, I really do not think I would be a very nice person. I don’t think I would be a very good Mom and I am pretty sure I wouldn’t’ be a very good spouse to Jim. If you are reading this and you have the opportunity to help someone who is a caregiver, do it. You have absolutely no idea of the life you are saving, but you are. They will not be able to put into words how grateful they are, but they are. Even if they tell you they don’t need help. Even if they tell you they are fine. Even if they seem fine. They aren’t. They are scared. They are overwhelmed. They are depressed as Hell. They need you.

posted by Karen in Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (10)

10 Responses to “Got someone’s back?”

  1. Wendy says:

    Karen, I don’t know if you ever considered yourself to be a writer, but you are. A wonderful one at that. Your words strike a chord each time I read your post. I pray you continue to write and speak to us. This life we have been handed is so difficult at times. Bless you.

  2. Kerry says:

    Thank you for this post. I am going to try to make a copy of it for my step mom. My dad just passed away on dec 5 from Alzheimer’s. All your words would soothe her I am sure. She had a lot of guilt and all the other emotions you mentioned. She lost it at times with my dad she told me. But she also cared for him 24-7 and kept him at home till he died. She did her best. I am so sorry about Jim …Karen…but thank you for your blog. I appreciate you.

  3. Kimberly Smith says:

    Karen, I just wanted to thank you for your latest post. It helps so much.

  4. Lynne Peterson says:

    Karen, you are brave and honest, qualities that are necessary to do what you are doing every day. I am in awe of you. I’m caring for my parents in their home now, one with Alzheimer’s and one with dementia. I cannot imagine also raising children and working while doing this. I retired last year in order to be with my folks. I miss teaching, but I tell myself I’m still teaching, I just have 87 year old children now. I pray for you for strength and humor as you continue to live. God’s blessings on you.

  5. RitaG217 says:

    Thank you for your posting. You, Jim and your family are in my prayers daily. I am a caregiver and my little dog keeps me going. She gives me a reason to get out of bed in the morning. She give us entertainment and laughter.

  6. Maureen d. Connolly says:

    Hi Karen,
    Your post today reminds me how grateful I am for all I do have in my life. I have great caring children and supportive loving parents. I have an amazing group of friends. My step daughter knows how much I love her Dad. Sometimes the help comes from people and places I least expect. I watch people who appear to have everything but do not enjoy life, as we do. My husband has taught us all how to truly live . . . one day at a time . . . taking time to love and laugh. I have a lot of faith. I am the best person that I can be . . . and that’s all I can be. Right now life is still manageable. I put the future in God’s hands. Thank you. xo Maureen

  7. Jason B says:

    Nice post. I’m subscribed now.

  8. Bakhus says:

    Karen, thank you for your thoughts. I know for me I got so use to the caregiving and adjusting, it’s after the 24/7 where it gets difficult, it’s after placing your loved one in Long term care where it gets very difficult. Thank you for your post Bakhus

  9. sherri williams says:

    God bless you for being able to put into words what so many of us feel. Explaining to others is sometimes the hardest part.

  10. Nena says:

    This is tremendous. I am a new caregiver and am so blessed your site was referred to me. You write what all of us feel so succinctly. Thank you. God Bless you and yours.

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