Please fix that chick you see in the mirror….

This is such an amazingly good photo of Jim now. I love it. Dec. 2014.

This is such an amazingly good photo of Jim now. I love it. Dec. 2014.

I am searching. For me. For a way to survive. For a way to thrive. For a way to find myself in the midst of sorrow and angst. I am lost in my own mind of worry and contempt. Contempt for myself. I realized over the holiday break I don’t really like myself but I haven’t quite put my finger on why. You must understand I am a realist and I am just as hard on myself as I am on anyone else. Is it because I can’t save Jim? Is it because I have thoughts of wanting it to all be over, which in reality would mean him dying sooner rather than later? Even recognizing how difficult it will be to be a single parent, I sometimes catch myself wanting this to end abruptly so the children (and myself and everyone else really) won’t have to watch Jim lose himself and all he is/was.  Is it because I lose my patience with my children when I am tired or stressed or disgusted by the fact I still need to clean off my desk, clean the bathrooms, do another load of laundry and clean my room and fix dinner? Do I find contempt for the person in the mirror because she isn’t a superwoman after all?

It’s true. I don’t like myself. I don’t like my looks and most of the time I don’t like me. I don’t like the person who needs help all the time. I am blessed by the fact we have many friends who have jumped at the chance to help us. I recognize what a wonderful support system we have and also recognize I wouldn’t survive without them. But I would be much happier being the one to help than the one constantly sucking up whatever is offered our way.

I am emotionally a mess. At any given time I could cry or fill your ears with a myriad of complaints and turn it into a tirade and then end it by feeling guilty and regretting the whole mess. I am constantly trying to get a handle on my mental status, my physical well being and organize my life, my house, my thoughts and my world. But, it is completely impossible to organize anything with a spouse with Alzheimer’s Disease. Things are misplaced. Things are broken. Things are left incomplete. I feel like a mess. I want order and all I can muster is major chaos.

Sometimes, I sit and I look at Jim. Really look at him. I no longer see the man who swept me off my feet….I see the hunched shoulders and the thin body and the timid responses. I see a shell of the man that at one time I thought could do anything and would help me conquer the world. I feel so sorry for him. I don’t want to feel sorry for my husband because I know he wouldn’t want it, but I do. I can’t help it. The contrast from a few years ago to now and I know the contrast that will take place over the next year or so….it breaks my heart. For Jim. For our children. For our friends. Jim deserves so much better. Not just because no one deserves to suffer at the hands of Alzheimer’s Disease, but because he has always been such a stand up, kind, giving and all around good guy.

There are more stories lining up than I can share….but I will share the one that stands out the most to show how I am failing my family…..

I recently had to drive just over an hour away to take Frances for a new adventure in her life. I had a choice; I could drop her off and immediately return home, or I could linger and have dinner with a friend. I chose the latter.

So, Brad was left home with Jim. Keep in mind, I promised myself a long time ago that I would never have the kids “babysit” Jim. So, I get Frances settled and I go to a leisurely, wonderful dinner with my friend. While we are eating, I have my phone on vibrate so I don’t hear or see the two messages from Brad. When I get to my vehicle I call home.

“Mom, where are you?”

“I’m leaving now. How was your day? “

“Good. You didn’t tell me you would be gone for lunch AND dinner. I didn’t know I would have to fix me and Dad dinner too. I thought it would just be lunch. “ Ouch. 

“I’m sorry honey. I just got done with dinner and will be home in about an hour. Did you get enough to eat?”

“Yes. But why aren’t you home yet?”

“I stayed to have dinner with a friend. I told you I was.”

“Ok. I will see you soon. I love you Mom.”

“I love you too.”

Less than five minutes later, I get a frantic call.

“Mom!! Dad is crying. He has his finger stuck in the dog collar.”

“What? Can you undo the clasp? How did it get stuck?”

“I don’t know. It’s not the clasp. We can’t undo it. Mom, he is in pain.”

“Brad, go next door and get Rex (not his real name).”

“Mom, I can’t. I can’t leave him.”

“Yes, you can, go now and get him and he will be able to help.”

“Ok.”

Ten minutes later, I call and find out the neighbor has indeed come over and helped. Once I am home, everything seems fine. Neither Jim nor Brad can demonstrate to me how he had his finger stuck. Jim doesn’t even seem to remember it happened at all.

The worst part comes as I am tucking Brad into bed:

“Mom, I think you need to get someone to stay with Dad. You know. All the time.”

“I know. I have been thinking about it.”

“Well, someone besides me needs to be here in case an emergency happens. Dad can’t do anything and there needs to be someone here to help him when he can’t.”

Yep. Mom of the year right here. My ten year old has more sense than I do. Hiring a caregiver at home seems so easy. But it isn’t. It isn’t just about money (although that is huge). It is finding someone. It is making that call or several calls. It is having someone in your home, in your life, ALL THE TIME;  to see your many facets and to see the clutter and the mess and the ugly side of things. It is an intimate look into your family and your life and it is a huge step to take. I know I am about to take the plunge and I am not happy about it.

Next story:  Clingy and trapped.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (18)

18 Responses to “Please fix that chick you see in the mirror….”

  1. Chris says:

    I was at this very place less than a year ago. I had placed my husband in Adult Day Care-specifically for Alzheimer’s patients. He kept eloping. Yes, they had alarms on every door and he tried every one of them at least 15 times per day. They finally told me that they could no longer keep him.
    I, luckily, found a wonderful in-home care service for him. Because of the hours, they provided two different aids. And because of the type of service, they would do light laundry, light cleaning and fix meals while they were there. I have to admit it was awesome for those couple of months. I’d come home to a clean house with the dishes done!
    Alas, the decline was just too rapid and again, God was watching out. A bed became available at an Alzheimer’s Assisted Living Center. He has been there almost three months. He has adjusted well. They take VERY good care of him. And we can be a family again. We can go to dinner once a week. We just pick up Ron and away we go. We drop him off at the end of dinner. I feel like I am less of a caregiver and more of a wife and mother. Things are settling into a nice routine….
    I guess what I’m saying is having someone in you home may seem invasive at first, but it might also be just the little bit of help you need until you need more.
    Good luck to your family on this journey…

  2. Barbara Wood says:

    Karen,
    My husband Tom has not had ALZ as long as Jim, but the disease has progressed rather rapidly. I had to talk him into retiring 17 months ago and the change has been so dramatic . Tom was a natural leader, but always humble about his abilities. Almost every group he belong to , he ended up chairing; now making a decision regarding a menu can be maddening. We worked together at his law practice, but I could still say that he brought me joy every day and I was still “in love” after being married 49 years. This last year, as we were entering our 50th , was probably the most stressful we have ever had.. As I was trying to adjust to this new husband he began to believe more than one woman lived here. I never knew when I was me or the other woman. I no longer had any stability, future,no partner to share with, he can barely make any decisions

  3. Kimberly Smith says:

    Karen,
    I know it’s hard to accept outside help, but I think once you can get someone and adjust to it, you will see an improvement in many things. Just having that little help will relieve more stress than I think you know. I’m sure you’ve had someone to provide a meal for you at some point and just not having to worry about that for one evening really helped out. Getting someone to stay with Jim would relieve so much stress for you and the kids. At least one day a week maybe you could take the kids bowling or see a movie and try to forget about things for a few hours would do so much for all of you. My husband has Younger Onset Alzheimer’s at age 58 and my Mother has Frontotemporal dementia and she is 74 and lives with us. My youngest son is 14 and I have a 22 and 23 year old sons that still live at home. They are able to stay with them for short periods of time (between work and school) but when I get home I feel guilty because they always say I didn’t think you’d ever get home. Then, they proceed to tell what happened while I was at the grocery store. I’m used to it, but they are overwhelmed and ask me “How do you do this all the time? It would drive me nuts”. My husband is usually content to sit in his chair the entire time and is usually quiet, but my Mother is another story. She’s always got to be doing something. She tries to help, but it ends up being more work for me. She says ” I put away the dishes that were in the dishwasher” I say thanks, only having to take them out of the cabinet because they were dirty. She repeats the same question every couple of minutes and each time it’s new information for her. It’s hard being a caregiver. I’m 46 years old and a wreck. I have two sisters and a brother. Not one of them has ever offered to help. They were here for Christmas Eve and all they could say was I don’t know how you do it. Never offered to help out in any way. All of my husband’s friends stopped calling or stopping by a long time ago. Except for his best friend of 35 years, but even those visits are getting fewer and farther between. I feel your frustration, anger, fear and sadness. It is sad to watch once independent, smart people turn into to someone you barely recognize anymore. I think of you often and I hope you get some outside help soon. Trying to do it all will ruin your health. Trust me, I’m living with health issues primarily caused by stress. Sending hugs your way, k.

  4. Sandy says:

    Man I so wish we could get together! I TOTALLY understand all that you wrote……and yes my kids told me things sometimes also….things I knew in my heart but just did not want to accept. Brad is right it may be time to get help. I KNOW it’s hard!!!!! All these people in your house……email me if you want. <3 Sending a hug your way this morning.

  5. Joan says:

    I am going through the same feelings.I can’t leave my husband alone anymore and I dread having someone invade my privacy,how will that be for not normal anymore.Yes I too looked at him Christmas and felt sorry for him,he doesn’t deserve it.I have to look at pictures to see the man I knew.It’s a herculean effort both emotionally and financially to get someone.I wish us luck.Yes I wish it was over,I do not want him to suffer such a miserable end.There are no easy answers,except personal sacrifice which is what this disease is all about.Keep calm and carry on!

  6. Lisa Olsen says:

    This could be me except with a 16 and 18 year old. The grief, frustration, chaos, and brain chatter wondering how can I continue to do this? I started therapy just for me every other week. Someone who doesn’t love me to provide an objective look into my world has helped. Not a fix to the horribleness of the disease but another support.

  7. Tom says:

    I can relate to so many thoughts & feelings you have. I had recently put together 5 photo albums on FB to celebrate my wife’s 66th birthday, and got to see 30 yrs of marriage in a short period. What a change I see in her and us. There are so many things I miss that I had forgotten about. The issues with in house care, guilt, leaving her with my grandson for short periods are there every day. The thoughts of wanting it over now and what that really means, then feeling bad that I would have such thoughts. Your blog is so honest, so relevant and so helpful. But some of the conclusions you draw are just not true. You are an incredible caregiver, wife, mother, and person. Thanks for what you do for the rest of us.

  8. Jill Clark Page says:

    I would call your pastor and discuss what the church family has done in the past and if they have anything. We didn’t, we did it all, and I am paying for it now.

  9. Lee Ann says:

    When you raise children, they say to give them many positives to one negative. Find good things about them, instead of all complaints. Why are you expecting Superwoman from yourself and dislike of yourself when you are trying to be human and doing Superwoman things? Give yourself a break! You have known all along that you can’t do it all. Yet you expect to do it all with a smile and pearls. We all do the best we can.

    As for clutter and strangers in your house, its very liberating to have someone make a meal or throw a load of clothes in the wash. Never mind that they see your personal life, they have gone into homes before, some homes are better, some homes are worse. Again, give yourself a break.

    I still suggest you get someone to see every week, just for yourself. someone you can talk to, just for you. You still can’t be Superwoman. You can only be human. I think you are, right now, grieving in place. The five stages of grief are hitting now, you have the anger, the fear, the bargaining, etc. It really IS a long good bye. I had a friend who cared for his wife for a year, she had terminal cancer. he went through this same back and forth, hating and loving, feeling guilty, etc. Anticipatory grieving. I think you are doing wonderfully. Give yourself a pat on the back. Sooner or later, it will be allright. You will be okay. The kids will do wonderfully. They will have more compassion for others.

  10. Connie Howard says:

    Karen- All I can say is your emotions and feelings are all normal and common experiences for all of us. After having caregivers in the home, I put Glenn in a facility. In the past 6 weeks he has been in 3 places. Finding care for him outside the home is VERY difficult even in so call memory care facilities. I just don’t understand why they can’t deal with the normal symptoms of the disease. It is very common to simply medicate as usually the patient can’t tell you what is wrong. They just choose a drug that will quiet him down and have him sleep. The costs for finding care here in FL are $5K-$6K for a memory care facility. If that isn’t enough, many want me to hire additional care for him in their facility. I heard it gets harder and that is proving true but I refuse to believe it has to be this way. I would very much like to find out more about the foundation and how to help others going through this adventure of Early Onset Alzheimer’s Disease. My husband is only 58 and that is a problem in itself of dealing with someone with the disease at this young age.
    I emphatize will all of those posting information and I too pray for the Lord to relieve Glenn of this disease either by miracle or death. In the meantime I will fight for him to get the best care and be by his side as he deals with this disease.

  11. Michael Bracewell says:

    Karen, thank you for writing your thoughts with us. I cared for my mom with Alzheimer’s and went through a lot you are going through and it was both physically and mentally draining. I finally broke down and hired a caregiver to live with her, I went through a few trying to find just the right one and then found a Fijian caregiver to live with her full time. They are such naturally loving people, over time I needed to hire another one so the first one could take some time off. I felt so comfortable with them caring for my mom, they treated her like they were their own family and me too which helped me through everything. If something ever happens to me, my first choice of care would be a Fijian. I’m 56 years old and worry that someday I will have Alzheimer’s. Its scary because my chances are high since my mom had it along with her brother, sister, and their father. I kept a journal myself and my mom passed away 11 years ago and to this day I have not read what I wrote. Maybe because I am scared to bring back all the sad memories I went through, or to remember what happened and think that maybe someday I will be putting my family through the same thing, or maybe it just because I want to remember my wonderful mom the way she was before this decease took her from us. Bless you and your family – Michael Bracewell, Santa Rosa, California

  12. Elizabeth Brewer says:

    Karen, I so wish I could be that person to help you, but I live too far away to pop in on a regular basis. What you express is the grieving process; what is SO hard to tell you that when this is over you will miss Jim, the responsibility and turmoil incredibly but there will also bean incredible sense of relief. No one told me that and I just added that to the guilt pile. When someone else dared to point it out, I started the long journey back to life-a life of my own where I actually controlled situations once in a while. At this point I encourage you to keep writing-even though you don’t have time to do it. The Garner Foundation is REAL because of you and Jim. Others need you as much as you need help right now. My love to you and Jim and special hugs to two great kids who are journeying with you and will be wonderful adults because of your example!

  13. Kathy Taylor says:

    I cannot feel exactly like you, Karen, because both of my children are grown. They live near but both have jobs and families. I was the only caregiver for my husband for 7 years as he steadily declined into these disease except one short trip. After a hospital stay last July we placed him in an Alzheimer’s unit about 25 miles from our home. I feel your pain every time that I read your blog! Don’t put yourself down! Take care of yourself and your kids!!! Jim, himself, is gone, as is my husband! I miss Him but, when the time comes, I will not miss the person that he has become. He would hate this person because he sounds a lot like Jim. A smart, funny, fix anything kind of guy!!! We have to remember these men and not what they have become. Believe me, this realization has been a long time coming!!! God bless you and your family as well as everyone dealing with this devilish disease!
    A

  14. Lois Keller says:

    Listening to your son will give him value, and the advice you needed. He is a big part of this and sometimes you need something like this to happen to take action. Don’t judge yourself! I wish you the best, but most of all I wish this wasn’t happening to you. Throughout this whole thing you and Jim have raised a brave, empathetic, and amazing son.

  15. Wendy Sweigert says:

    I used to be one of those caregivers…loved my job and loved my clients. Go through a reputable agency and make sure the caregivers are fully vetted. I also took monthly online classes for my job, Came in handy when my own husband developed dementia! It may be trial and error but could also give you all the peace of mind you need

  16. Living your nightmare is the hardest thing you will ever have to face. Several months ago when I had another melt down I found myself in a dark deep hole. Lying in bed alone crying this thought popped into my head. I could get Joe in the car and drive us off a tall bridge into the lake. By the time we were found we would be out of this struggle. Several weeks before I wondered if I put rat poison in a Snicker how long would it take and how sick would it make Joe? My next thought was, Are you losing your Faith? At that moment I didn’t want to lose my Faith. This thought brought on tears and hard crying that I had never experienced. God tapped a lot of people on the shoulder. The next week I had phone calls, dinner brought in, “Just thinking of you”, flowers, even a guy I dated in 1951 called from California. God sent these messengers to say, “You’re not alone I am always with you even in your darkest times”. I visit Joe he may know me or not but that’s fine. I sit holding his hand, taking him candy, cokes and love. I know this is all I can do for him or for me. For my children’s and grandchildren’s sake I strive to set an example for them of strength and love in these darkest years. Karen, you are a trooper, a wonderful wife, and mother, You touch many women and men knowing they are not alone and feel as you do. In my blog I writ this often. Life is good even living with Alzheimer’s.
    Are you going to DC in March. I wish I could but I am on a walker. Give them a speech from all of us. Our young people need a cure. Lovingly, Deane Johnson

  17. Shirley says:

    Karen, I am so very sorry about what Jim, you and your sons have been “dealt”! Please do get some help in your home with Jim. You will be surprised how comforting it will be to know, for example, every Tuesday and Thursday you will have time to run errands, get your hair trimmed, relax with a cup of coffee due to the fact that you are scheduling time for a caregiver to be in your home. Of course it will not fix everything but you absolutely do need some “me” time as do your children. I’d love to speak with you when you are ready. 356-0342. Warmly, Shirley McGee

  18. Janet says:

    You definitely need outside help and it’s wrong to expect a child to take care of someone with Alzheimer’s. Of course it’s frightening for him. All of this is very unfair for you but I hope you try to give up the notion of being the perfect mother or caretaker. Perfect doesn’t exist, you just do the best you can. Those are simply control issues.

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