I’ve finally had a couple of full night’s sleep this weekend. Still tired, but not exhausted as I have been over the last month or so.
We had someone from Hospice out Thursday to let us know what services are offered for my mom – it was a good conversation and intellectually everything made sense. A few hours later, however, my mother and I shared our first cry about her condition and the position in which we now reluctantly find ourselves. There are some services that would be of some help for us, I think. They offer chaplain access as well as respite care in the forms of up to 5 days of Medicare supplemented respite and volunteer sitter relief. Aside from that we both agree that it is a little too soon for Hospice. Just having the conversation, however, was enough to shake us both off of our foundations, and has continued to do so at both predictable and unpredictable times throughout the weekend. I cry while driving, I cry watching TV, I cried at church both during worship and when in the prayer line.
I have experienced an anxiety never before known to me – and gravely unsettling. It frightens me to think I am going to feel this way after my parents are gone – and feel that way for a very, very long time. I am having trouble staying in today, although I know that is the ONLY way I will maintain my sanity. My mind races forward into the ‘when they aren’t here anymore’ time – what will I do? Although my life has been very difficult and complicated over the last few years – I have sadly grown accustomed to the level of stress and chaos. I have become dependent, I think, on taking care of my parents. It has provided me with the most purpose my life has ever had – EVER. I feel so honored, and so humbled to be helping my parents – and sadly the reward will be life without them. I will know peace in the future and will have solace and be gratified that I stepped up to the plate and did the right thing by them.
I cannot envision my life without them and at times have thoughts that I don’t want to go on without them here…how stupid is that? That completely betrays the natural order of things and most certainly would not be what my parents would want their deaths to do to me. My dad, once retired (unofficially medically) refused to spend his retirement because he wanted to leave us an inheritance. He has never known that it is his retirement that we depleted to take care of him – so gratefully he will have gone to his grave believing he did just that.
I am so scared. I don’t want to do this. I am not ready for this. But, I can say that I am grateful the good Lord has given us this time together – I will cherish it for the rest of my life.
As a footnote, although her primary care doc thinks its time to accept the inevitable and make plans to enjoy the rest of her life (he’s given her 1 year), the specialist has given her 1-2 years without a transplant. We are still not giving up on my mom’s transplant – if we can get her weight up and strengthen her she can be relisted on the transplant list. But nevertheless, this Hospice visit apparently started our processing of this phase of her life.
I wish I had the words to help you. One to two years is a long time and you do have the hope of a transplant. This is a great site with very good information. I find it helps me stay in the moment/day and not think too much about the future, except to plant the seeds of what my future may look like. If I can’t keep my mind off the future….I ask myself the question, then what what will I do, give myself the answer and ask the question again and again, until I’m five or ten years down the road. Somehow it’s not so scary afterwards.
Oh, Derek, my heart is sad for what you are going through. I am so glad you have gotten a couple nights of good sleep lately. I hope that continues. You can handle anything better with sleep.
Linda is correct. One to two years is a long time, and your Mom may be able to get a transplant. Even if your Mom is no longer with you two years from now, however, you will be given strength for the future. The things you are going through now are preparing you for that future. I believe God is going to use you in mighty ways in that future, as He is doing now.
My mother-in-law is under hospice care right now. She is starting to not eat now. We are sad about that, but I think there is also a certain peace about the inevitable. She has lived a good life, and we treausre the memories. You will feel the same way when the time comes.
Try not to dwell so much on the future, but rather concentrate on the One who holds the future. In my devotions this morning I ran across some verses that I would like you to check out. (Psalm 94:18-19) Also check out Hebrews 13:5b.
Know that we are here for you, Derek. Keep us informed.
Hi Derek–I think it’s terrific you spoke with Hospice. It’s so helpful to have the information so you know when the time is right for both of you to use the service. I also think the conversation with Hospice created a nice moment for you and your mom–how powerful is it to cry together! Wow! You both gain strength in being vulnerable together.
I think a meaningful life builds into a meaningful tomorrow. Your purpose today prepares you for even a greater purpose tomorrow. And, I like Linda’s perspective: Focus on today, plan for tomorrow, leave the worries in the past.
Thank you for your update.
I hope it helps you as much as it helps us.
Hi Derek…Right now I think you are still in the emotional phase for which we all can totally understand. I remember vividly when my Aunt passed out in our kitchen one night and after weeks of testing we really thought it was just an iron deficiency or something like that and when the doctor finally called and said it was full blown leukemia my husband and I sobbed before we were able to walk into her room and break the news. We gave ourselves the much deserved melt down but then mustered up strength and as Sharon is saying about her mother in laws illness now we truly treasured the moments we had together. Somewhere in my blogs I have a picture of my aunt and I describing our last holiday together…easter 2006.
the lord knows the answers…a year after my aunt died he sent mom here with us after having a heart attack. I like you sometimes think what will happen once she passes…what will I do? I quit my job, Im losing my skills… but I know in my heart there are further plans for me. I believe God has dreams and plans for me that I cannot even imagine…I believe that for you, and for all of us!!…Keep Believing!!
I will close in saying I hate numbers Derek…30 years ago they gave my father six months to live with pancreatic cancer and he actually lived 18 months and was able to walk me down the aisle…I dont like to bring up 9/11 however healthy, vibrant people walked into a building and did not come home that day. There are no guarantees any of us will be here tomorrow. Please try not to focus on tomorrow. It will get here soon enough. I always say, there isnt a guarantee I will not pass before my mom. We dont like to think this way..however it is reality. Embrace today….tomorrow will get here soon enough.
I understand all your concerns…I truly do. We all are here for you….And as Denise wrote…your purpose today is preparing you for a greater one tomorrow…your a wonderful son!!!
Derek, I, too, have been down the hospice road. It was with my father after three ER visits. Frankly, I think they put my Dad on hospice just to give me a break. I don’t think my Dad ever understood why you are given hospice services, so that made it a little easier. It was just explained to him that he wouldn’t have to die in a hospital, but could die comfortably in his own bed, which he did, and he wanted that after watching his beloved wife of almost 50 years pass away in the hospital. She was there only 11 days, but the decision to take her off the machines that helped her breathe, was heart wrenching. Hospice is a much better way to go than that.
My Dad was on and off hospice for over a year, and I must say it was wonderful. They were so supportive of both of us. The social worker was such a blessing for me that it was difficult when my Dad passed away and I was no longer in regular contact with the social worker. I appreciated that people came to my Dad instead of my Dad having to be taken to the doctor. I was thankful for the support for both me and my Dad.
Your Mom may be on hospice quite a while, as none of us knows how long we have. Enjoy your time with her, as I know you will. Let hospice take on everything they can. You’ll be surprised how much they can do for you and your Mom.
We are all here for you, Derek. You are giving your Mom a wonderful gift with your love and support.
Hi Derek,
I’m so sorry that you have so much…everyday. Caregivers definitely have to have a certain amount of control within their responsibilities. We are the advocates for our carees. Unfortunately we can’t take control of the future (I’ve tried (: ). I have a hard time letting go of the worry, when I think of the future. One of my biggest worries is: How long can I care for my mother? I wouldn’t want her to be with anyone else, but I do know I (as well as my husband and the kids) have limitations. I can’t completely stop the worry, so I TRY and focus on the positives that I can do for her each day. What caregivers do for the benefit of their carees everyday, are memories that will always be with us. You do so much for your parents, try and rest in that when you can.