A world without Jim?


Visiting Monticello,  July 2015.

Visiting Monticello,
July 2015.

Please, please, make all of this go away. The pain. The worry. The decisions. The agony of watching Jim slide away as we try to cling to him. As he tries to cling to himself.

It hurts. So bad. And I can’t stop it. From hurting me, him or the kids. The kids. As a parent, all I ever want to do is protect them and keep them from hurting but this hideous disease blocks me from protecting them. It is taking their father from them and they are front row witnesses. All I can do is stand helplessly by as their pain grows, his death grows closer and I frantically work at picking up pieces as they fall faster and faster until I can no longer keep up. They see me struggling to find a solution. They watch as he tries to speak and they can barely manage to put together his mumbles into a clear thought. They help him with so many daily activities during the day they can’t ignore his plight. They are entrenched, as we all are. I feel as if I am failing them while I am failing him. I can’t help him. Can I help them?

I see him look to me for help, I see him struggle to speak, to get dressed, to brush his teeth, to bathe and shave, to help around the house…..he deserves so much more, so much better. How dare this happen to such a wonderful person? How dare I fail him? Fail the kids? Fail myself?

I thought the grieving process would get easier but the truth is the grieving process is only subliminal for a while and then it re-emerges stronger than ever. Just when I think I have a handle on letting him go and moving on, becoming a single parent, making all of the decisions, being Mom and Dad, figuring out finances and facing my loneliness head-on and accepting this fate….I look at him, see is frailness, his desire to stay with his children enabling him to watch them grow up, his failure to manage the most simplest task and the disappointment on his face….what am I doing wrong? What can I change? What can I stop and divert?

The world keeps spinning around us. But my world has stopped. Friends have disappeared. But in truth, not only do I understand, it is ok because he is constantly within ear shot and I can’t have a private conversation anyway. My world is selectively smaller these days and yes, it hurts, but there is nothing surprising going on. Friends have called and I have not answered because I can’t really talk. It would be a superficial conversation and I am not up for that. I am barely up for a real conversation, but putting on a front has never been my style and at this point it is impossible. I feel as if I am in a prison, trapped and controlled by something no one is regulating.

I now wake earlier to assist him in the mornings. One morning recently, I got him in the shower, helped him, got him drying off and went across the hall to wake Brad up. I spent a few precious moments caressing his sweet face and hair and just having a private morning moment with my son. When I went back to the bathroom, Jim had found a razor and “shaved”, cutting his chin and leaving large portions completely untouched. And that is where we are.

I constantly feel pulled between taking care of him correctly and taking care of the kids correctly. They both need me and deserve better. But it is impossible. I am torn at all times and I know the answer. While I fail them both, I fall further and further. Jim and I discussed this several years ago when he was first diagnosed. The kids come first. But it is harder to do now, when it is actually upon us. I want to do right by him but I want to be the parent our children need as they lose their father.

It is just so sad to watch him. He is a ghost of his former self. It doesn’t have anything to do with my recent burdens. It is seeing him struggle to try to do a simple task and not be able to and to know at one point he had so much pride and was capable. Not that it would be easier any other way….I am just hurting.

Yes, I am depressed. Friends have suggested medication. My therapist has recently started mentioning it as well. But I feel like I have a right to be depressed. I am in a depressing situation. And I need to feel the hurt and the pain before I can move on, if I ever am able to move on. Right now I can’t fathom ever moving on past this pain. But I know that being medicated is going to numb some of the pain and I need to try to hold off as long as possible. I am not opposed to it, I will probably eventually take something to help me, but for now, I want to try to stay off anything that will deter me from understanding the pain my children will feel, are feeling and have felt. It is ok for me to hurt, I don’t need something to ease that pain, but I have no doubt that at some point it will be time to get some assistance pulling myself out of this funk.

This is a most agonizing journey and I am hopeful that at the end of the road I will be a better person and somehow survive strong enough to continue to help others. I am amazed at the number of people coping with this same plight and hurting and struggling as we are. How is our country able to stand strong without helping the weakest? My friends, there is a fight brewing, and I hope you will all be with me. It isn’t about money and it isn’t about class or race. It is about doing the right thing and about common sense. It is hard to imagine this is an issue, but it is. It is also hard to imagine a world without Jim in it.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (23)

23 Responses to “A world without Jim?”

  1. Chris says:

    Medication is good. It does not kill the pain. It helps you work through it. It helps you focus. It will help you to help those who need you.
    And when you decide to place him, it is not that you are abandoning him. He will be safe and well cared for and you will not have to worry as much. It will afford you the time to be a family again-and not just his caretaker. Placing my husband was the most difficult decision I had ever made. And I’ve made A LOT of difficult decisions in my life. But 9 months later, it was THE BEST decision I have ever made. It has given us time to spend time together-as a family-as a couple.
    Just things to consider on your journey.
    Still praying for you all…

  2. cathy massimi says:

    I agree with Chris. Medication does not kill the pain, it just makes it not the sole focus of your life. You still feel everything, but you are able to cope with everything as well. Please consider medication. It has changed my life and let me live again – for my children, husband . . . I still have fears, but I am able to face them.

  3. Bakhus Saba says:

    Karen you are not failing Jim at all you are doing the best you can. I do know Jim would be proud and he is proud of you and the Kids. You are there for him

  4. Deb McKnight says:

    So sorry for the struggles you and your family are facing. As a person who has had depression issues (my doctor wanted to put me on medication), I found the help I needed at a local health food/vitamin store. I understand the hesitation of medication. The vitamin supplements worked for me. Above all, you must take care of yourself – no matter the option you choose.

  5. Rose says:

    I do was depressed in the years we cared for my mom and like you I was offered medication to help with it. I refused because I knew the source of my depression and felt that I could manage it. A year after her death some depression still lingers but it’s okay. The lows are less than the highs so I know things are getting better. Bless you and your family, I wish you all peace.

  6. Jill says:

    I agree on the meds. SSRI’s helped both myself and mom. Then both daughter’s are on them still because I wore my self sick.

  7. Ann says:

    Dear Karen
    I understand your pain have accompanied my mother through this while supporting my dad who had terminal cancer my faith in God as well as medication at times have helped deal with all of this. Medication does not numb the pain it helps us process it! It is so important to take care of yourself and this is often what we put aside first . My other recommendation would be to connect with others for support people will rally around if you let them and this can even become a double blessing to you as well as to them. I found in our situation when we let people help and care for our parents it lightened the load and brougth new energy which we didn’t always have.and it made us aware of a higher purpose in all this difficult time! Will continue praying for you and your family xxx

  8. Lisa says:

    I didn’t take any medication for depression while caring for my Mom….. Like you, I knew the source of the myriad of emotions. Sixteen months after her death, I finally said okay….I gotta have something to help. It helped and I wish I had taken it while she was still with us. It would have helped me think clearer…deal with the situation better, interact with her better. The emotions don’t disappear. I was finally able to see the sunshine while in the midst of a storm. I’m still in a storm, as my husband is more than 20 years older than I. I grieve as I watch him decline and struggle. I grieve as my world changes….how to balance the need to work to secure my future with the need to be with him to help him and cherish the time with him. Medication helps. Praying for you.

  9. Ann says:

    I must add you have already brought a higher purpose to your situation by sharing your story with so many others and creating community for those if us sharing the same somewhat rocky path. You are a true inspiration to many!

    • Lois Keller says:

      I totally agree with Ann. We are your friends, keep sharing your story, keep doing your best, reach out, speak, this is unacceptable! We understand, I don’t know the answers either, but keep Jim’s words in mind. The kids are first, you know that, he know’s that, you can’t project his thoughts anymore because every so sadly they are gone and he has severe brain damage from Alzheimer’s. I’m with you, I support you from afar and I wish you and your family peace, finality and know that you have done your very best every step of the way.

  10. Laurie says:

    Please except medication. It changes you as you deal with everything happening for you and your children. Being a caretaker full time leaves little time for yourself and other responsibilities. He would want you to be able to have some time to take care of you and the kids. While my mother suffered for 6-8 years with the horrible condition, my father took complete care of her. During her decline he was able to have her go th Hospice one week of each month. He slept that week. Hired a housekeeper, was able to take a little time away…he went everyday, and she had good care and they then could keep track of her health. I pray for you to find a solution. Please do not let yourself go so deep. It takes time to begin again, and it adds more sometimes simply from that.

    • Lois Keller says:

      Laurie, I think these are wise words. You need the strength to do this, it doesn’t mean you are weak or don’t feel. It means you are going to do whatever it takes to make it through this.

  11. Jeri says:

    I agree with everyone. Don’t let yourself sink deeper. Although I never even thought about medication….it may have helped. Like someone suggested, you could try the supplements first. This life you are living is so very hard, but somehow we manage to do what we gotta do. But that being said, it sure takes its toll on us. I don’t think there’s anything harder than watching someone you love suffer with alzheimers and everything that comes with it. Just try and take it moment by moment because thinking ahead is too hard. Karen, you and your family continue to be in my thoughts and prayers.

  12. Lee Ann says:

    I agree with the people that think some mild medication would help with the depression and horribleness of the situation. It won’t take away the problems, but it will help you deal with them better. It won’t take away the pain, but it will give you the oomph to realize that you are doing pretty darn good. If your therapist is suggesting it, I’d say go along with it. there are some good meds now for depression and anxiety, they don’t turn you into a zombie. Good for you going to the therapist. It might help your kids if you could find someone for them to go to also. You need to remember that you are doing a darn good job. You are trying to do something alone that nobody can do alone.

    I know many wives that have to put their husband into a facility, and when I ask them how they are doing, they usually say, “I don’t want him here. This is my job to care for him.” but after a few weeks, they realize that they can be the wife again, they don’t have to be the caregiver anymore. It does get a lot easier. Head up girlie. It will be allright.

  13. Lori says:

    My mom has Alzheimer’s and I feel some of that same pain. One thing that has helped me was reimagining core family members, including kids and the person with Alzheimer’s, as an improvisational comedy troupe. There to riff with each other, help each other, create weird and often funny new worlds together. Saying “Yes, and…” to what shows up. Doing so within our family has been a life, health, work, and sanity saver. Keeps the burden of being the “strong center” shifting around a bit. And, the moments that that doesn’t work, sometimes holing up alone to do nurturing-to-the-point-of-ridiculous things for myself: like binge-watching all 153 episodes of Gilmore Girls on Netflix over the course of a few weeks, after everyone else was sleeping. Soothing. Mindless. Ridiculous. Ahhhh. My own personal spa. Healed the broken heart nicely that time. This summer, Buffy the Vampire Slayer!

  14. Chris says:

    I’m working full time, caring for my 63 yr old husband with Alzheimers and my bipolar/depressed teen. I held off on medication as long as I could. Medication changed everything for the better. The newest meds are much different – they are not numbing. They just make you feel more ‘normal again’. You wouldn’t deprive yourself of medication if you had diabetes or some other disease. This process is debilitating, we need all the help – emotional and medical – we can get. We are all so grateful for your postings. As painful as they are, they are so helpful. Bless you and your family.

  15. Karen I too didn’t want to take something to mellow me out. I told the Dr. I want to feel this pain and grief. I have a reason to be sad. (I would not exchange the sorrows of my heart for the joys of the multitude. And I would not have the tears that sadness makes to flow from my every part turn into laughter. I would that my life remain a tear and a smile. Kahlil Gibran from A Tear and a Smile) Karen, when Jim enters another stage I think it may be easier because you will know he doesn’t think beyond the moment. You won’t see fear or sadness in his eyes. All anyone can do is Love.

  16. Ann says:

    Sending you my prayers, Karen… as always, for strength, wisdom, and peace. You are an incredible woman and it saddens me to think that you feel – for even a second – that you might be failing anyone. You are an amazing wife and mother doing your best in an absolutely unfair, awful situation. I definitely understand what you’re saying about the medication, but agree with others above who suggest something mild to take the edge off. I can only speak from my own experience, and the meds have never numbed my pain, but rather helped me think a bit more clearly, deal with the feelings, and focus on the things I need to do. That being said, it’s a very personal decision. ((Hugs))

  17. bridget says:

    Dear Karen,

    I understand your pain and feelings of helplessness. Your Jim and my David are close to the same level of decline and both look exceptionally fit – physically. Some days I just want to scream “why is this happening to this fabulous man and my family” but I cant imagine life without him either. I just take our life day by day..not many understand how different the early onset type affects the family dynamic. Love to you and my prayers. Take the meds – you will feel better and be ready to cope with tomorrow.

  18. Andrea says:

    I would suggest trying the medication for a couple of months. If you don’t like the results, you can always stop taking it (with the assistance of your therapist, of course). My husband was with hospice for a few months, but was removed from the program since he does not have two of the categories in stage 7 of the FAST scale. He has only one. This scale has been the most comprehensive I have found to explain what I can expect. Unfortunately, no one told me about it until 2 years after his diagnosis. (ttp://alzheimersworkshop.com/index.php?option=com_content&view=article&id=54:fast-scale&catid=27:alzheimers-disease&Itemid=47)
    is the website I use, but you can find it on others, although sometimes it doesn’t list the detailed information under the stages. I understand the isolation. Each day I keep reminding myself that we are one day closer to the end of this. That may seem morbid, but it helps me get through the rough days. Praying for you and your family.

  19. deb says:

    You think tbe anti_depressants will numb you and then
    all your stored up depression will overwhelm you when you get off of them. they don’t work like that. they might suggest an SSRI like zoloft to try first. that was OK for me but i read a suggestion from Autism Daddy (i am a special needs parent) to try wellbutrim and that has worked really well for me. i know you arent interested in meds but justt thought I would throw it out there. also,your services depend on what state you live in to an extent. check out the Calif state website IHSS. tbe state will pay you to care for your husband at home if you like. you probably qualifyfor tbe max which would be approx 3k a month. i am moving back toCa for my daughter because tbe sorry state of Texas ranks last in disability assistance. i know this sounds crazy but i thought you might want the info.

  20. Mary gold says:

    Karen, have you thought about adding a *donate* side bar to your blog ? I see these all the time on blogs there is an option to use various credit cards or paypal
    it may bring in just a little extra, also using a *portal* people go to Amazon through your site & you get a
    part of their purchase, at no cost to the reader.
    Just some small suggestions as you soldier on….

  21. Mary gold says:

    Also dosen t Jim qualify (even though he isn t 65) for SS disability by you applying for it. He is prematurely
    disabled & this is granted for Alzheimer’s, I have heard of other EO patients who are granted this.

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