An open letter to caregivers

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This is an open letter to all caregivers. I want to answer some of your messages you have sent me. I apologize for not being able to respond to each and everyone individually, but I want you to know that there is usually a common theme in all of the notes I receive. I also want you to know how much I appreciate you taking the time to share your stories and to send me tidbits of info. and advice. I hope this blog helps you on your journey.

I am not in a super good place right now. I go through spurts. Sometimes I see a positive future and feel like I am making a huge difference. Other times I only see how awful our lives are right now and how terrible they will be for the foreseeable future and beyond. I think about watching Jim decline and dealing with the financial woes, the emotional upheaval and the overwhelming sadness that envelopes us. I sometimes scream at the top of my lungs, “I can’t do this anymore.” I never say it isn’t fair, I just say I can’t do this anymore. When in reality I can, I just don’t want to.

I am often told to take care of me. Very good advice. But, I am not sure how I am supposed to do that. Am I supposed to quit my full time job that causes me stress? Then I could exercise daily and have time to fix healthy meals and time to take naps and have leisurely lunches with friends to make sure I am relaxing. Am I supposed to hire someone to come watch Jim and take over the household? I understand the sentiment behind the words. People care and sometimes the only thing they can offer is encouragement to take care of me. Easier said than done, knowing I need to follow the words of wisdom. Each of us needs to heed this advice, once we figure out how.

I have realized a few things about people. One being that some people just suck. Big time. I am not trying to be negative here and I am not trying to call any one particular person out. But I read story after story of promises not kept, hurtful words said and the complete isolation some caregivers have come to face. You know what? Even with all of the wonderful support and help I have received, I have the same things happen. I try really, really, really, really hard not to dwell on such things. Most of the time I am able to put a positive spin on different situations… when the person “bought” a piece of furniture from us, in the process we ruined our kitchen countertop moving it out of our house, and they never paid. When the kids asked me about it (many times) I explained to them it was a great $50 education. When Brad said we should call the cops because that is stealing, I reminded him that sometimes it is better to learn a lesson than to worry about how you learned the lesson. Did I mention how hard this is sometimes?  There have been “friends” who have completely disappeared. I just don’t write about them in my blog…but I have had it happen too. I have the friend, who I once was close to, even taking a weekend vacation together, who now sees me and doesn’t speak unless I do first. You are not alone in this. I want to remind you to not focus on those that have abandoned you in such time of need, but to appreciate even more those that have surrounded you in love. If you look hard enough at all of those encouraging you and helping you, the vanished “friends” will fade from your view and your worry all together. This takes an enormous amount of effort. Just like everything else, sometimes the vision is easy and sometimes not so much. Focus on all that is good, even when there doesn’t seem to be much.

Last week I had a really, really bad week. For lots of different reasons. Then I got a terrible scratch on my shin from the cat while I was trying to give him flea medicine, I burned my arm quite badly AND got in a teeny tiny fender bender. ALL IN THE SAME DAY. It was also the same day Frances won her student council election and the same day a mysterious box of chai tea (I don’t drink coffee) was left on my porch. So, at the end of the day, I could focus on the 3 horrible (and a little painful) reminders of how bad my life is right now, or I could celebrate how awesome it is to have a friend who would go through so much trouble and a daughter who worked past her fear of losing and became class president. Again, not easy, but one would take me down a dark path that would only prolong all of the bad things and one would help me raise my children in a happier home. The choice was mine. This is not to say that sometimes I don’t sit and focus on all the bad, but I try to be cognizant of the good too. I think I am really just having to train myself. Otherwise, I am scared of where I will end up and in turn where my children will end up.

Some people vanish only to appear at just the right moment. Just when the small circle of friends you feel like you inundate way too much with your sob story have done their part and you are scared if you call them one more time it will be too much,  a random note, e-mail, dinner, invite, hug, phone call will happen almost miraculously from a “lost” acquaintance.

If you can picture viewing a moving black circle from above. At one time I felt like I was in that circle, but it was HUGE. Wide open. Ready to go and conquer the world. Anything was possible and there were lots of other circles coming and going. Some got attached and came along for the ride. There really was just lots of circles always around. Some came and went. Through the past year or so, I visualize that circle as growing smaller and smaller, with fewer and fewer other circles in view. Just a few. And as my circle grows smaller, my mindset changes and my focus changes. Frivolous things become just that, frivolous. Mean, disrespectful, untrustworthy people become easier to spot. Good, reliable, steady comrades become more precious than gold. I worry terribly about the friends I have getting worn out, tired and bailing if this situation continues on for years and years. That is why I try really hard to “spread the love” in terms of who I call and how often. It is understandable. I ask you to remember back to before the diagnosis. What kind of friend were you to someone that went through an ordeal? Did you think about calling or stopping by, but you just didn’t know what to say? Did you intend to but never had time? That happens. Most people have the best of intentions. Often times they just don’t know what to say, how to say it or when to say it. I can tell when I see someone who is uncomfortable, not because they don’t care, but because they do and they don’t know what to say. Give those people a break. Start the discussion. Let them know you have missed them and if they want to help, they can just come and sit with you. Maybe they don’t want to hear every detail of how bad your life is now, but they just want to be your friend. Let them. That is who they are and how they can help you. Don’t try to force them to be someone they aren’t and in the meantime you will re-kindle a wonderful relationship I am sure you really need at this time.

I give you all of these words of wisdom in the hopes that I will be able to give you a different take. It is hard. Hard to see outside of our window of despair. Just try. Then let me know how it goes. I will do the same.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (13)

13 Responses to “An open letter to caregivers”

  1. Lisa says:

    The disappearing friends is very hard. It makes you feel like you’ve done something wrong or you’re not good enough. I can shake it off most of the time. I appreciate the time you take to write this blog. I’m sure it isn’t easy. Take care

  2. Rose says:

    Have been through the harrowing, uplifting, difficult time of being a caregiver to my beautiful mom that we lost due to this dreadful thing called ALZ this past May. With all that happened in those 7 difficult years I would do it again. I couldn’t have done it without my family and a few dear friends though and for their support I will be forever grateful. I wish you and your family strength and calm moments in your fight to take care of your husband.

  3. Lori LoBue says:

    Hi Karen,
    Thank you for taking the time to write a blog.. Being a caregiver of 7 years your letter hits home.. A lot of our friends have disappeared, but I have my children. But really even with many people around helping me I still really feel alone.. Thank you again .
    Sending you prayers and good thoughts…

  4. Susan Woollard says:

    As always, so touching and true.

  5. When I talk about Joe I cry. I feel sorry for my friends I know they don’t know what to say. I am a cry baby at 84 as I was at 3. When I go see Joe I preach to myself to not see the disease but look for the man under all the plaque. It took 30 minutes for Joe to kiss my hand. He started out introducing himself to me. I pray to have the strength I have the love to be with him at the end. I know two women whose husband are not as far along as Joe. I hate for them to see first hand what is in their future. We talk almost daily. Karen if you will e mail me your address I will send you my book. You are the age of my daughter that is why I feel so close. Lovingly, Deane Johnson

  6. Wendy Sweigert says:

    New friends have come forward to help us even when family has made themselves scarce. It is so humbling!

  7. Sherri Williams says:

    Such true words!! Got to figure out how we can all take a “trip together” even if only in our minds. Would still be fun and a great stress release!

  8. joan says:

    I went to an alz learning series,they said oh this is not
    the end of your life,no theres still lots of good.Well excuse me it is over alz at 57 sucks! To think of how
    my husband will die is just too much no matter how
    they try to gloss it over.A kind lady came forward to help,so on it goes.I’m thankful for her!

  9. Lee Ann says:

    I’m one of the lecturers that say “take care of you.” Stress can cause illness. You can’t take care of Jim and the kids if you don’t take care of you first. I don’t mean quitting your job and hiring a chef. I mean, “take one of the kids and walk around the block.” or “sit in the backyard in the dark and talk” or “get into a group meeting for caregivers who understand exactly what you are going through.” Going to get a pedicure would be great fun but that’s not going to draw your kids out and find out where they are in this whole deal too. Walking and talking, going swimming, take the dog for a walk, anything to get a reprieve for a few minutes every day. Even if its a hot bath, get some time for you. You have to take care of yourself.

    You will get through this. Its not going to be easy. But you will get through it and move forward. Sadly not your marriage or Jim. I think you remember I had a husband that was severely mentally ill. I was his caregiver for 5 years. I felt as though my life was over too. One deputy sheriff, I’ll never forget. He once told me “someday you will look back on this and you will remember. But you will be in a different place and you will have made it through.” I look back on those years and I remember the hopelessness, the sadness, the misery. But I’m no longer there. I’m here. I made it through, a little worse for wear, but I have gotten through to the better times. There will always be an undercurrent of sadness for what was, but I’ve been able to get to contentment and happiness. Life is just different now.

  10. Kimberly Smith says:

    It’s so easy for people, your doctor, your loved one’s doctor to say “take care of yourself”. How? I’m just trying to survive, get through the day and it’s been the hardest battle of my life. I’m a full time caregiver to my husband and my mother. I feel like the oldest 45 year old in the world. My husband was an only child and the kids and I are all he has. My Mother has three other kids and not one has offered to take her to the doctor, for an outing, or just come for a visit or a phone call. It has amazed me how all of my husband’s friends have disappeared. In the beginning right after his diagnosis a few friends would come by and take him for lunch and it made his day. But, one by one they have disappeared as well as my brother and two sisters that have not once offered any help. It kind of makes you bitter in a way or it has me. Hang in there the best way you can. I can’t do much, but I can pray for your family and others as well living this nightmare that never ends.

  11. Jeri says:

    This is for Karen and Everyone that may benefit from financial help. I was just watching the Today Show and Seth Rogan (actor) and his wife were on there telling about “Hilarity for Charity” …. which he started to help the Alzheimers cause. One of the things he mentioned was the grants that are available for paying for care for the Alzheimer patient if a person is unable to pay for themselves or a loved one. There is an online site with all the info. I thought it was worth mentioning.

  12. Kathy says:

    Karen, your words are so well put. I was told today that I would have to pay one more month at least for my husbands care in a nursing facility. The wheels of government help is very slow. I realize that I am in lots better shape than most people but it seems so unfair that folks that work hard all of their lives, make good livings, and have so many plans have to end up spending all of the money they have saved for the care of a loved one. Friends and family, old and new is what has strengthened me. I was a caregiver for my precious husband of 48 years for the past 7 years. I would not trade any of those 48 years of being married to this wonderful man! Finally, after my health failing, I had to make the decision to put him in a ALZ facility. It was the hardest decision that I have ever made. Every day that I leave him is harder than the day before. He is slowly weaning himself away from me. It is a wonderful facility with wonderful caregivers but I really “want my cake and eat it, too”. I have enjoyed the freedom to go when I get ready, but I also want him home. I struggle with this every day. Thanks for keeping your blog and listening to me vent!! Love you, Karen, and you and your family are in my prayers.

  13. Sandy says:

    Call if you want to chat.

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