When the stuff hits the fan

Posted by bradmm @bradmm, Sat, Apr 13 5:22pm

My wife has outlived her expected lifespan (MDS, RCMD) by quite a long time and I FEEL like the current status quo will continue indefinitely. However, I suspect that one day things could very well take a turn for the worse and we'll get the BAD NEWS. AML is the next step in this progression. If that day comes, what am I to say? I've been telling her for years that NOBODY knows what tomorrow will bring, we never know how long we have but getting a(another) bad diagnosis will push her over the edge and me along with her. Words only go so far. I see fear now and I know more bad news will only freak her out. I will, of course, stay by her side come hell or high water, but it won't be enough,

Hi @bradmm that must be so hard trying to figure out how to approach tough subjects with the people in your life that mean the most to you.

I wanted to tag fellow Connect members and caregivers @IndianaScott @tavi @rmftucker @dianajane @harriethodgson1 and @jodeej as they may have ideas for how to approach this topic, and also may want to take part in this discussion.

Back to you @bradmm Have you discussed with her doctor's how best to approach this? I would like to add that I love your current approach to quell her fears by telling her nobody know what tomorrow will bring.

Ethan, I suggest you read some articles about anticipatory grief. Feelings of grief are also associated with chronic illness. I've coped with multiple losses, written articles and books about it, and honesty seems to be the best policy.

I highly recommend 'Smiling Through Your Tears: Anticipating Grief' by Harriet Hodgson, M.A. & Lois E. Karen, M.D. I have shared with the grief support group at my church and the Alzheimer’s group at a local nursing home.

This helped me come to terms with the knowledge that my husband who had been diagnosed with Alzheimer's and vascular dementia about four years ago might live several more years, slowly loosing more of his mental ability. He is already needing skilled care as he is unable to do any thing except feed himself. His speech is getting more garbled and is difficult to understand. As I deal with the personality changes that he has gone through these last years, I needed understanding to deal with the man I used to know and the one that I continue to love now. Finding my healing path and following the healing steps listed at the end of the book helped me to not feel so guilty about taking time for "me".

Thank you @rmftucker. I worked on Smiling Through Your Tears for a dozen years. So glad it was helpful.

Hello @bradmm You have been dealing with caregiving for so long you know the road is a hard and ever changing one. Doesn't make it easier, but as someone said way back when 'the only constant in life is change'. Over the years of my wife's brain cancer fight she endured many changes, all for the worse. The only thing that differed was how challenging each one was.

One of the most valuable lessons I learned as a caregiver was that I could not worry about those things I had no control over. It is hard to come to terms with, but in our case it allowed us to focus on maintaining the best quality of life I could for my wife. No one can foretell, nor control, the future. This is true of each and every one of us, but especially true when there is a chronic medical condition complicating our lives. All we can do is think about what changes might occur and then plan for them as best we can. Hopefully some of those plans will never be needed as things work out differently than what we might have been worrying about.

When times were the toughest for me during my caregiving years I found the comraderie of Mayo Connect to be a huge help since chronic illness and caregiving can be so very isolating.

My favorite quote for caregiving times is this one: "Courage does nto always roar. Sometimes courage is the quiet voice at the end of the day whispering 'I will try again tomorrow'"

Strength, courage, and peace!

Thank you all but my sense of your comments is that I was looking for help for me dealing with this reality. I'm mostly looking for how I will help her deal with this. She struggles now and, if/when it gets worse, I know she will lose all quality of life. It's far easier for me to sit back and try to be the cheerleader than for her to have to face her own destiny. How does the patient come to terms with what they face? I'm sure it's different for everyone but, to come full circle, maybe that's where my feelings come in… the feeling of helplessness watching your loved one deal with something and knowing there's not a damned thing to can really do to change it. I think it's common for some people (men especially…?) to want to "fix" things when they go wrong. I know that's been my role for many years. However, there are some things no one can fix.

Good morning @bradmm I think you may have answered your own question in a way. You are right…there are many things in life we can neither fix nor alter. As a caregiver I believe this is where compassion and empathy come into play. That is what we can always give! All we can do is express our love to the best of our ability and know that while this will not 'fix' the situation or reverse anything, it will be the only balm we have to offer as we try our best to support our loved one as they progress along their difficult journey.

Nothing broke me more than those times when my wife pleaded to 'help me' when I couldn't. In those times I found the best I could offer her was my promise to be by her side.

Personally I also tried to do my best to follow my mother-in-law's advice to 'never borrow trouble' worrying about what might happen ahead of time.

Just my further thoughts…

Scott's reply is right on. We can't fix things but just be there and let her know that you will always be with her. Some times words aren't enough, and we must find actions that will help tell our loved ones what words can't express.

I try to find things that I and my husband can enjoy together and since music was a big source of relaxation for him, I always arrange to be at the care center when a music program is scheduled to be sure he attends with me. If they ask him is he want to go, he will say "no", but I don't give him the choice. I just say we are going and he always enjoys it.

I know your situation is a little different, but is she confined to your home? If not, just trying to get her out a few days a week if it is only a short drive, may help. And it helps you, too, as you are helping her. Try to find something you can enjoy together.

Scott, dealing with 'never borrow trouble' has been a constant battle for years! She is who she is and probably won't change but my wife constantly anticipates what might happen next in all areas of life. I keep lobbying for us to make the most of today, the time we have right in front of us, going back to the fact that no one knows how much time they have.

rmfticker, no, she's not confined at all. In fact, she's pretty active still. We just got back from our first of two routine trips to the "gym" (activity center) every Tues & Thurs. Yesterday we drove 2 1/2 hours to meet our son and his family at a dude ranch west of here (Texas). We take at least one trip to the Caribbean every year for me to SCUBA dive and, even though she used to join me, she still loves going there and usually on the boat with me. The key with her is to be distracted and travel is her favorite distraction. On paper, she should be pretty sick but in reality she's doing very well. Her treatments are now weekly instead of every three weeks like before and her blood work is not improving so don't know how long this will last but, once again, that's why I keep pushing for living in the moment!

Thanks all!

It is so hard to deal with the helplessness I feel when mom says she wants to be well and wants to know what is wrong with her….I just encourage her and say she will be herself again and then distraction. Her doctors advised me just be encouraging as possible. When she was first told her diagnosis she was despondent and cried for days…then forgetfulness mercifully took that pain away. Now it is a day to day sometimes moment to moment experience. She has crossed over from mild to more than moderate and I know that severe will come but I’m just staying inThe present as much as I can. I know so many others are in the same boat….I’m doing my best and that’s all I can do. This site helps a lot.

I'm in the same situation with my 73 year old husband. We both cried for days after diagnosis of Alz and continue to struggle after nearly 9 mos. I see his daily decline and it breaks my heart. I've gone to Alz and other support groups and that's helped./. My 80 year old radiologist brother was diagnosed with LBD at same time!! I look for and use all the support I can get. This is not what I ever dreamt our future would hold. I started having caregivers last week so that I can get out in peace and give him help and stimulation. Thanks all for this site!!!

@providence1960

It is so hard to deal with the helplessness I feel when mom says she wants to be well and wants to know what is wrong with her….I just encourage her and say she will be herself again and then distraction. Her doctors advised me just be encouraging as possible. When she was first told her diagnosis she was despondent and cried for days…then forgetfulness mercifully took that pain away. Now it is a day to day sometimes moment to moment experience. She has crossed over from mild to more than moderate and I know that severe will come but I’m just staying inThe present as much as I can. I know so many others are in the same boat….I’m doing my best and that’s all I can do. This site helps a lot.

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Hi @providence1960 I am sorry to read of your mom. My hardest caregiving times were those when I had no answers to her medical questions. ‘Our best’ is all any of us caregivers can do, especially when we get those feelings that it is not enough for our loved ones. So glad you find this site helpful!

I hope you had a nice weekend.

@maryterry

I'm in the same situation with my 73 year old husband. We both cried for days after diagnosis of Alz and continue to struggle after nearly 9 mos. I see his daily decline and it breaks my heart. I've gone to Alz and other support groups and that's helped./. My 80 year old radiologist brother was diagnosed with LBD at same time!! I look for and use all the support I can get. This is not what I ever dreamt our future would hold. I started having caregivers last week so that I can get out in peace and give him help and stimulation. Thanks all for this site!!!

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Hello @maryterry I am so sad to read of your husband’s healthcare journey. It is indeed a path we never foresee. Devastating diagnoses are beyond crushing and take time to process for sure. It certainly did for my wife and me. That said, I do believe it is better to share it, cry, rage, etc. than what I saw happen in my in-laws’ family when denial was their choice. So much precious time wasted and lost to them.

It is great to read you are having help! Was it easy to find?

I hope the sun is shining wherever you are today!

@bradmm

Thank you all but my sense of your comments is that I was looking for help for me dealing with this reality. I'm mostly looking for how I will help her deal with this. She struggles now and, if/when it gets worse, I know she will lose all quality of life. It's far easier for me to sit back and try to be the cheerleader than for her to have to face her own destiny. How does the patient come to terms with what they face? I'm sure it's different for everyone but, to come full circle, maybe that's where my feelings come in… the feeling of helplessness watching your loved one deal with something and knowing there's not a damned thing to can really do to change it. I think it's common for some people (men especially…?) to want to "fix" things when they go wrong. I know that's been my role for many years. However, there are some things no one can fix.

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When you find the answer please let me know. It’s me waiting for the axe to fall on my own destiny. I posted on another discussion area about this but in reverse. It’s me trying to figure out how to support my family by getting them to accept the possibility, more than likely, my bad luck of the gene pool draw and that I’m already seeing signs that are not good. My father, his mother and two of his brothers had this. It’s possible my grandmother’s father to brother but we will never know. I have a very best friend who discusses it with me who sees the signs. It’s my husband and adult children who blow it off. I’m needing them to be diligent and help prepare for the worse. If it doesn’t happen then TERRIFIC!

@debrat1

When you find the answer please let me know. It’s me waiting for the axe to fall on my own destiny. I posted on another discussion area about this but in reverse. It’s me trying to figure out how to support my family by getting them to accept the possibility, more than likely, my bad luck of the gene pool draw and that I’m already seeing signs that are not good. My father, his mother and two of his brothers had this. It’s possible my grandmother’s father to brother but we will never know. I have a very best friend who discusses it with me who sees the signs. It’s my husband and adult children who blow it off. I’m needing them to be diligent and help prepare for the worse. If it doesn’t happen then TERRIFIC!

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@debrat1 You know the old saying "we can only do what we can do." You can explain to your family the situation and the symptoms that you see now and the possibility of additional things in the future. You can encourage them to accept it and to help you as you go through this journey, as they will certainly go along with you. But you can't force them; we can't force anybody. We can only offer them the information and the tools. What they choose to do with it becomes their decision.

I find this discussion so interesting. My husband's health after his kidney transplant three years ago is much better than mine is at this time. My issues are all autoimmune related. I know the distinct possibilities for the future and each day I I'm grateful to be here and have the health that I have for that day. My husband looks through rose-colored glasses and figures "we'll deal with it as it comes up". I want to consider the possibilities beforehand, and be prepared.
Ginger

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