• Help the Caregiver

    Asked by mbeth on Saturday, November 16, 2013

    Help the Caregiver

    Hal has had 3 treatments. He will have his second PETscan on the 20th. We, then, see the oncologist on the 22nd. His 4th treatment will be Monday, the 25th, followed by a Neulasta shot. I know that he is nervous, but……

    I can often see the "down" look and know his mind is working overtime. He wants to finish our wills, which we started just before we found out Hal's diagnosis. He also wants to check with his long term care insurance provider to see if the six month waiting period can start the day he was diagnosed.

    Again, I know that ducks should be in a row; bow I also want to see him in "fighting mode". I told him, "We will beat this together!!!" I'm not sure he believes it.

    I take the dog for a couple of L-O-N-G walks a day to get out of the house and to clear my head. I try to be positive, and get upset when Hal tries to "analyze" things.

    Any words of wisdom?

    11 Answers from the Community

    11 answers
    • kashubian's Avatar
      kashubian

      mbeth,
      so sorry you are going through this, but since it's nothing we choose and we can't go around it, we just have to find our way through it. Everyone copes differently. We did our Advanced Healthcare Directives, our wills and Financial Power of Attorney papers just before he had his BIG surgery (the doctors said Big is bigger than major), before that and since he has just wanted to fight. He says it's my job to do the worrying and his job to do the fighting. He just works on getting better and I'm the one who reads the articles, asks the questions and analyzes the pathology reports. There's no way to tell by looking at him, but he is fighting. My husband was most nervous before his surgery and even talked about not having it. That threw me for a loop at the time.

      Like I said, everyone deals with this differently. How my husband copes is different than how my mother coped, and both of them are different than how my nephew coped. Different is ok, but if you see signs of depression remember that you can talk to your oncologist about help with that, too.

      I'm glad you're taking time for yourself, that's not something I've been very good at and it is taking it's toll. When I get overwhelmed, we talk. Those days my husband, bless his heart, says "I think this is tougher on you than me". Maybe some days it is. But we make a good team and when one falls down, the other is there to offer a hand up.

      Sorry there's not a lot of wisdom in this post, just some sharing, but what helps me is knowing that the good Lord never gives us more than we can handle...and when we can't handle it all we have to do is ask Him to take it back. Some days that's the thought that keeps me going.
      You're in my thoughts.

      almost 8 years ago
    • sherryhalpert's Avatar
      sherryhalpert

      My husband has always felt responsible for "running our lives". He has always taken care of the bills, the insurance, paperwork, etc. I always made sure I knew where to find the answers if I needed to. When he was first diagnosed he still tried to take care of everything but soon learned that he did not have the energy. I had to take over everything plus take care of him. I was always worried that I missed something or that I did not do a good enough job to prevent him from worrying. I would ask if he was worried and he always said no. One day he was so upset that I finally got him to admit that he was worried sick and he wouldn't talk to me about it. My brother was finally the one who helped him let go. He reminded him that he only had so much energy and he needed every bit of it to get well. He either had to relax and let me "XXX things up myself" (just like he had to do with our daughter when she was growing up) or use his energy for worry and soon he would have nothing to worry about because there would be no energy left for his illness. That took a lot of pressur off of both of us. It took a while and we were both very anxious as we accepted our new role. We immediately had a durable power of attorney, a medical power of attorney and an advanced directive drawn up (or in our case updated). That gave me the power to act on his behalf when he wasn't able to. Each day became better as he let go and I took charge. Each time I handled something new I felt stronger and more at peace because I knew that I could honestly tell him not to worry because it was taken care of. On his good days he worked with me and was able to see that things were being handled. I had to make a lot of changes in the way things were being done but at least he could see things were being done. We just recently re-did our wills. His surgery was July 2nd. The other thing we did is find special ways to spend our time together when he was less able to do things so that we could try to enjoy our time together. We have watched movies and read out loud to each other and listened to our favorite music in front of the fireplace. On real good days we have gone on "field trips". We have decided to look at this as our retirement time and find new ways to enjoy each minute of each day that he is able to participate. I find this support group helps me more than anything. I also have friends come stay with him because it helps him to connect with others which really distracts him and cheers him up and gives me a chance to get out. I don't know if any of this helps you and I truly understand the tremendous impact your husbands reactions have on you but I hope as time goes on you will both adjust. I wish I could say that this would be over soon but I have learned that we have a long journey ahead of us and each day brings its own challenges. May God bless you and your husband on your journey, may you find the best of cures and health, and may you find peace.

      almost 8 years ago
    • barryboomer's Avatar
      barryboomer

      He might find some HOPE on this website AND The Hallelujah Diet.
      Barry [email redacted]
      Do some research on the Internet on Raw Foods and Juicing for cancer.
      Can't hurt!
      Barry [email redacted]

      http://www.chrisbeatcancer.com/

      almost 8 years ago
    • MizJill's Avatar
      MizJill

      Good morning, Beth! I'm sorry that you and your husband find yourselves in these circumstances, too. I understand the importance of keeping your husband's focus on the healing aspect. I would just suggest that perhaps looking after all those administrative details might just free you both up to do so better. In other words; get it off your minds!

      We my husband was diagnosed, he was out of the country and had his surgery and initial treatment overseas. Thus, I ended up in a hotel room during his 44 days in the hospital and then with him for another 2 months of chemo/radiation. During those 2 months, as we sat side by side in the bed, I had plenty of time to ask delicate questions that we had never discussed before. I would say, "of course, all this stuff can't help but occur to me with everything that's happened lately... but it also could be *me* who gets hit by a bus tomorrow, ... so although we have every intention of not needing this info for a long time, we really should talk about.... " and thus we both talked about 'final arrangements' and so forth. It was good to feel that I knew how he felt about things and I was glad that it was done early so that as things *do* deteriorate, I don't have to add to his misery at that point.

      As far as wills and powers of attorney, we already have those done, but I also told him that our lawyer wants us to come in and update them (and he said that even before any of this occurred).. so he's agreed to that (although I haven't yet made that appointment)... and while we are doing that I'll get our lawyer (also our friend of 30 years) to guide us through 'advanced directives'.

      I'm glad you posted, because it gives me a kick in the bum to make that happen sooner rather than later. I certainly don't want to be doing this when he's in bad shape. You should do yours at the same time and emphasize that no one has an expiry date and it's just a prudent and practical move for you both. It may feel ghoulish now, but when it's done you can both relax and really focus on maximizing each day you have together. I hope those days are many and happy! xx Jill

      almost 8 years ago
    • MizJill's Avatar
      MizJill

      * edit * haha... the censor on this website makes me laugh... I only said " get off my b.u.m."... not like I said anything dirty there.... lol!

      almost 8 years ago
    • MMarie's Avatar
      MMarie

      Taking a look at our estate planning options (wills, power of attorney documents, transferring of real estate, etc.) and updating, revoking and/or initiating them to be drafted is always a wise decision. Working at a law firm, I can't begin to count how many times personal visits to homes and hospitals are made. Just because documents are in place doesn't mean that we're going to die any time soon.

      almost 8 years ago
    • Schlegel's Avatar
      Schlegel

      Whether or not you have cancer, it is always a good idea to do a will, living will and power of attorney. So both of you should get one.
      I also recommend support groups if available in your area. Cancer group for him and caregiver support group for you. Talk to a social worker, counselor or chaplain at your cancer center. Community clergy are not always as good with this.
      There are many other resources -- cancer retreats, cancer magazines (free at your cancer center), cancer support centers.

      almost 8 years ago
    • Schlegel's Avatar
      Schlegel

      Rereading your question, I would also say let him be where he is. Show your support by understanding that he is down. Of course he is down at this time. This is an overwhelming diagnosis. He won't be down always. Then there will be time to be positive. He needs to grieve and probably you too.

      almost 8 years ago
    • wld276684's Avatar
      wld276684

      My husband Brian was diagnosed with stage IV EBV positive NHL in April 2013, he just finished his 6th R-CHOP treatment on September 12, 2013. During the first couple of months I often caught him with that same down look. Being diagnosed with cancer is/was a shock to us both! On the drive home after just hearing he had Lymphoma he said "I can't believe this is happening to me!" I then said "IT was happening to US!" Although he is the one with cancer and has to deal with the treatment and the side effects, it has affected all of our family and friends. I just let him know I was there for him, and tried to just be with him when he got really down. His attitude has been mostly positive through these past six months. We were updating our wills before the diagnosis and ended up talking with our lawyer about more "things" we should take care of. We did those things just before chemo started. I too take my dog for longer walks. I also had a garden over the summer to "get lost" in for a while. We are trying to take one day at a time, dealing with what we can. I am reading everything I can get my hands on. Luckily the hospital had a cancer library with many books on all types of cancer. I'm still reading a couple. I took over a lot of the jobs he usually did. My husband luckily doesn't over analyze, (I'm the one who always over analyzes). So I don't know what to tell you there. Brian was anxious about paying the bills on time, but once he knew everything was handled he would relax. I found I had to stay away from the internet in the beginning, I wasn't getting much sleep scaring myself with all the info there. There are so many variables with this disease, that I couldn't get a difinitive answer online anyway. I am thankfully able to work from home most of the time, so we are together much more than ever. We have watched a lot of movies over the past six months. Brian is still not able to return to work, he's hoping he can go back next month. He started physical therapy last week to increase his stamina and strength. My daughter-in-law is a nurse and we have gotten a lot of great advice from her. We would have never though of physical therapy, but she did. We had to push the Dr. at first. When we first mentioned it he didn't think he could request it (not having specific body part to work on). My daughter-in-law told us to specificly ask for it to "build strengh and stamina". Wording is everything in the medical field. We think he has had Lymphoma for more than a year, and it took it's toll. This has been a minute to minute, hour by hour, day by day fight! Today Brian is in remission and I thank God for that! I hope I was able to help in some way.

      almost 8 years ago
    • JudyDowell's Avatar
      JudyDowell

      Mbeth, please check out www.thedcasite.com as I have fought mantle cell lymphoma and won sofar. I was diagnosed Feb. 2006, stage 4e mantle cell lymphoma. My bone marrow was 50% compromised. After the biopsies, they gave me six months to maybe eight months with or without chemo. I decided to study my cancer down to the molecular level and found that dca would help. Later I found a web site dedicated to people with cancer, both hopeful and terminally I'll, and their fight with their cancers. Also, as I studied this web site, I realized hope was within reach! They were beginning human trials using only DCA! It worked great for mcl! I'm eight years into this, I am in remission! I took one eighth of a teaspoon of DCA in water for two days straight, two days off, four days on, four days off... back and forth. You can see my posts at the web site under my name, judydowell. The oncologists can't believe I am still alive and WELL! They realize if everyone knew about DCA, they could go out of business! They are against it, but then they look at me and say things like, "you might be onto something". Ya think? I'm still here! Check it out, you can buy it at www.puredca.com and instructions and a calculator to figure out how much to take is at the DCA site. Enjoy life!

      over 7 years ago
    • JudyDowell's Avatar
      JudyDowell

      By the way, DCA works well with chemo!

      over 7 years ago

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