A Caregiver in Need

A Caregiver in Need

I’ve been thinking a lot lately about time spent with Fulton. I feel like I’m not giving him the quality time he deserves. It’s easy to feel guilty if you are a caregiver because it’s like there’s never enough time or emotional energy to give.

What got me thinking, I was talking to a friend of mine who had gone to see Fulton at the nursing home just the other day. He said to Fulton, “Do you know who I am?” Fulton gave him a thumbs up. Then he asked him, “How are you doing?” Fulton gave another thumbs up. Then he asked, “Have you seen your dad today?” And Fulton gave him a thumbs down, which was the right answer. I had not been there.

I felt guilty when my friend told me that story. It was like I wasn’t being the father I needed to be. My friend didn’t intend to put me on performance, but I felt badly I wasn’t there for my son. Life has gotten really busy lately and I haven’t spent as much time as I usually do with Fulton. What do you think I should do? If you have any answers for me, please let me know. I’m a caregiver in need, looking for answers.

Your Friend,
Dawson

21 thoughts on “A Caregiver in Need

  1. Talk to your son when you see him next and tell him what is going on. He knows that you haven’t given up on him and walked away. Even if you can’t be there in physical form, you are in his heart. The Good Lord will help him. Caregivers have other commitments and need rest too.

  2. Hi Dawson,

    My husband and I had two children (now in heaven) with special needs. I chose to be a full-time mom and caregiver. Kristie went to heaven when she was three. Bradley, when he was eighteen years old.

    Even though I was an at-home mom and teacher for them, I realized as especially Brad got older, that even though he had a lot of needs and he didn’t have the social life most kids have, he and I would be better off if I didn’t try to meet all his needs.

    It is likely that if you visit your son out of guilt, he will know that. But if you give yourself a much needed break from visiting, you will have energy and enthusiasm when you visit. You love Fulton, he knows that. If you let yourself be refreshed between visits, that love will likely be more evident to both of you.

    This is what I learned from my own time with my kids. And I think they benefited from having their mom (and dad) be fresh and enthusiastic because we were as well-rested as we could be when it was time to give ourselves to our kids.

    Keep up the good work, Dawson. You’ve been a fantastic dad!

    Beverly

  3. Hey Dawson,

    I read your latest e-mail a few minutes ago and it tugged at my heart far more than I thought it would.

    A few years ago my wife and I were part of a small-group Bible study. I distinctly remember one of the other participants telling about how he forced himself to be intentional in a relationship. He spoke of a weekly routine he had with his grandson, taking him out to breakfast on Saturdays. He shared that there were times he didn’t really want to, or felt like he had other things needing to get done, but that God had put it on his heart that time spent building that relationship every week was “eternal,” as compared to time spent on work or household tasks, etc. When he had that realization, he committed himself to always making that time a priority above all else.

    My sister went to be with the Lord about a year ago after a courageous battle with breast cancer. As she was the only girl in a family of 5 kids, and being quite a bit younger than me, her and I were never terribly close. In fact, our relationship was more often than not fairly adversarial. Even though we both lived in Lincoln, Neb., which isn’t terribly big, it was rare that I went to visit her. In retrospect, I wish I would have told my f’ed up pride to “go to HELL” (sorry for the tone, I’m feeling particularly emotional about this all of a sudden) and spent a lot more time with her.

    I guess to answer your question of “What do you think I should do?” I would encourage you to put Fulton above all else. Not to say you aren’t important and valued at work or home or church or elsewhere, but I fully believe God will sort that out for you. Trust Him, and leave those details to Him. I know for me at least, it is incredibly easy to let busy-ness get in the way of relationships, and as I continue to ponder what my Bible study friend told me, I solidly believe Satan himself uses busy-ness to pull us away from what really matters. Even if it’s busy-ness in ways that “seem” Godly, like volunteering at church, etc. There are plenty of times when my kids want to do something with me and I’m not in the mood, or I’m working on something else. Not to say my tasks aren’t important, but will the world come crashing down if I drop what I’m doing and spend 20 minutes building Legos or train tracks? No, it won’t.

    I hope this helps, Brother Dawson.

  4. My Dear Cousin, You have been a terrific Dad and caregiver down through the years. I’m sure Fulton would tell you that if he could. 🙂 I know it is hard, and exhausting many times. I’ve been there, with mom. Don’t be so hard on yourself. You need a break once in awhile too. I will continue to pray for strength and all that you need, as well as for Fulton. Be encouraged in Christ. I love you! Cousin Ann.

  5. Dawson, Please know that the challenges of being there for Fulton is part of your message to the world. It is your story and you share the truth with us on life. God makes the time that you need to be with him because it helps you both through these trials. You do not intentionally mistreat Fulton or neglect him. Don’t ever think that about yourself…………….sometimes God needs you to be somewhere else for Him. To share your and Fulton’s story with everyone is hard, and this is part of it. The decisions you have to make with using your time. God knows when you are not with Fulton that he is always in your heart and prayers. Love you both with lots of prayers for continued strength as you walk this unexpected life with Fulton. He knows that he is loved and that is all that matters.

  6. Don’t let that guilt consume you. When the person you are caring for knows that you love him and you do what you can when you can and genuinely care for him in those moments that is what matters more. And of course our lives get busy or we need time for ourselves to take care of “us” so we can better care for those we love; all of that to say, it is not something to dwell on but evaluate priorities but not get hung up on the fact that you were not there but focus on what you plan to do for next time you are with him. Let’s face it we can’t all be everywhere all the time…..as much as I would like to be sometimes.

  7. Dawson,

    Don’t beat yourself up about this. You are a great dad and you go to see Fulton regularly. I remember when my Father-in-law was in the nursing home and we went every night to see him but it just go to be too much and I kept getting sick. My husband decided that he would stop after he got off work a few times a week and then we would go on the weekend. That worked out fine. You have to remember Fulton is being taken care of and you have to continue to live your life. You do so much good for others and God is watching over you. Fulton knows how much you love him. It’s good that others can stop by and visit him as well. It gives you a break so you don’t get run down. Remember you are the most important person to yourself.

    Blessings to you and your family.

    Mary Tilford

  8. I was feeling like you didn’t today, so I asked my caregiver friend to wat h the video by Greta Thunberg. We all got the spirit and found a common goal. Here is a link to the video. I hope it helps.
    https://youtu.be/H2QxFM9y0tY

  9. Blessings to you Dawson,

    I agree with the other responses you have received here. You are a wonderful dad to Fulton, and yes he knows that. I don’t believe that he was giving a negative thumbs down, he was merely answering the question posed to him. I am a caregiver for my mom and a helper for my stepdad. Working full-time on top of all the other things in our lives doesn’t leave much room for rest. If you are going to be able to visit and care for Fulton then you need to care for Dawson as well. Otherwise you will be no good to him. And you also need to really understand that he does have people caring for him, so he’s not alone. Guilt comes from the enemy, don’t accept it any longer. If you don’t work when you need to, to earn money, then Fulton will not be able to stay in the care that he is receiving right now. Let others bless you, by blessing your son. Continually praying for Fulton’s healing and your strength. Do only what you can, not what you wish you could.

    Blessings.

  10. hey Dawson –
    romans 12:1-2
    Fulton knows you love him & are also needing to live your God given life, which includes being a caregiver.
    Stay Swell,
    In Him,
    w<

  11. Dawson,

    I don’t have much to add to the thoughtful comments and suggestions already offered. In Christ, we are essential parts of one body, and when one part experiences pressure, other parts can be called upon to joyfully help bear the load. Although your primary concern is how much time you personally can spend with Fulton right now, can some part of the frustration be alleviated by making sure someone who loves and cares about Fulton is there to spend time with him during those times you cannot? Will you feel better about the situation knowing that someone is there engaging with Fulton, reducing his quantity of alone time? You may not have the time right now to personally visit as much as you like, but you may be able to find a few minutes (even if you have to call from the bathroom 😉 to place a few calls to line up someone who can; Fulton will enjoy the interaction, and surely his visitors will be happy to carry the message to Fulton on your behalf that you love and miss him and so look forward to your next visit with him. It’s not a perfect solution, but we also cannot let the perfect be the enemy of the good, and this may be good enough for a season.

    With much love,
    Linda

  12. Ecclesiastes says there is a time and a season for everything. Sometimes we want things to stay the same, but God is dynamic and there will always be change. However, as long as we are seeking to do God’s will in our life, the times and seasons he allows us is the perfect time and season for anything and everything.

  13. Hi Dawson, first let me say how much I get out of your posts. They are always so inspiring. I cannot even fathom the emotional journey you and your family, including Fulton, have been on. The only thing I can compare it to is that I was a caregiver to my sick mother for three years. At times I was so overwhelmed that I begged God to intervene in some way. He always did, but it was in ways that allowed me to keep going rather than to quit (not an option anyway). It taught me that I am not required to be anyone’s “all”. I can skip a day, or two and all is still OK. No matter where a person with challenges stands in their journey, they should be allowed the dignity to learn to fill their hours in some way. When we suffer, we grow. With every problem, there is a gift. You are suffering too. Take care of yourself, and allow Fulton some time to think about you and what you’ve done, and even miss you a little! God will send substitutes in some way when you need a break. And who knows, maybe the thumbs down simply meant “not today, maybe tomorrow!”. Maybe the thumb was hopeful instead of let down. 🙂

    Your friend,

  14. Do not be so hard on yourself, but perhaps your state has an in-home Care program. Fulton would be home and under the care of a nurse. You would see him often. It works fairly well, down side, turnover of nurses could be high, it is a big committment for the nurse. I will be praying for you, and Fulton. This a tough decision.

  15. I agree with the others but I also identify with your wishing to do more. I took care of my parents in my home as long as it was possible. First my dad, then my mom moved into the nursing home less than a mile from my house. Self employed, I have always traveled for work about 20% of the time but I spent time with my parents every day that I was home. I still regret not having done more. I think God gives us feelings for a reason. I believe that if it is possible to carve out even a bit more time to spend with Fulton, you should do it. You will both feel better. Just my opinion.

  16. Dawson,
    I cannot begin to grasp the enormity of your situation. Reading several of the responders, it seems their advice is relevant. Taking a lesson from the book of Job, the best I can offer as a friend, is being silent but being near in spirit: that you are not alone and that I care when you are hurting.

    In prayer for you, bro…
    Carl

  17. Hello Dawson, Caregiver in Need From Wayne Lampe the guy with ALS Lou Gehrig’s Disease 13 years. We have had contact via email. I have no voice, but we can use Messenger on Facebook I’ll stay logged I . If you see the blue circle on we can video call. I can hear you and respond using chat. I think I can give a different persecute and help guide you. wtlpc@hotmail.com
    I looked up your post’s about Fulton.. You are 73. I know you can’t take care of himself. Tugging of your heart…You want to be with him more? Yes/No? He needs you there and would love it! You are busy doing ministry. You must be asking God, “What is my priority ” yes/no?

  18. When I was taking care of my mother in the nursing home, I was 2 hours away. I went weekly. Soon I could see that her needs were greater than I expected. She needed more than 1 visit weekly. I then started going 2 times a week which led to 3 times a week. Then I moved closer to the area and was able to make multiple trips to see her and check on her care. I looked back on this now and think was that her need or mine? Was I trying to satisfy a need in me or guilt about something? I worked through most of it. I see that I was still seeking her approval. I am not saying this is your situation. I do not know your circumstances. However, what is enough time spent with a loved one that is helpless and their needs are great.
    I am not sure why a friend would have to tell you this information. I do know that Satan come to rob, kill and destroy. You have started a pray show that he hates you for. How dare you stir up the anointing in millions (?) of people. So, he comes to whisper in your ear about being a bad father and not spending enough time with your son. How did this message help you or Fulton? It sounds like it is full of guilt, shame and condemnation. I do not know you personally. However, I do listen to your heart during the pray show. I hear a person that has a deep compassion and love for suffering human beings (wonder who gave you this). You hear from God so talk to your father. If you think you need more time with Fulton then so be it. If not kick Satan to the curb and tell him to stop distracting you. Not to worry he will be back with other lies to add confusion and chaos in your life. We need you Dawson. I sent this in an email by mistake that is why you received it twice.

  19. Mr. McAllister,

    I wanted to answer briefly and say you “should” give yourself mountains of grace–because God does. It is very evident how well you care for Fulton, and how much you love him!! If I remember correctly, you now believe Fulton is saved by the blood of Christ. As hard as it must be, please give yourself the same grace you would give anyone else walking in your shoes. You and Fulton have eternity together–where Fulton will have a new body–one in which he can do anything–and you and he will enjoy eternity exploring the New Heaven and New Earth. These are the truths I comfort myself with, in the passing of my 21 yr. old son Mark, in early 2009. I look forward to he and I jumping off cliffs together (into water) and doing things we couldn’t (or wouldn’t) have done in this life. Be encouraged Brother!! You are a wonderful Father, and caregiver to Fulton. And I believe Fulton would say the exact same thing!! 🙂
    Sincerely in Christ,
    Nancy Tuz

  20. As a nurse in a personal care home I see many situations as yours. The majority are children visiting elderly parents but there have been younger residents with parents still living and active in their lives.
    Let me first say I am encouraged by your dedication to your son. It warms my heart to see family so involved in their loved one’s life and you are very intentional in the time that you spend with Fulton.
    I also encourage you to make sure to take care of yourself. If the caregiver is burned out they have nothing worthwhile for their loved one. It’s not fair to you or Fulton to get burned out by making visits a chore. Sometimes a break is a healthy thing. And distance can truly make the heart grow fonder. Keep loving on your boy, but don’t forget to take care of yourself too.

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