The what ifs

[Faith in Him]

This is to all of you wonderful caregivers out there. Boy, do you have a tough job.

Anyhow, I have a quick question for you. I have a need to discuss with hubby the what ifs. It makes me feel that we have a plan for the children should something happen (I could be hit by a bus, right?). Even down to how the insurance money could be spent. Gosh, this is awful but true. The problem is, while I seem to feel better after these talks, Hubby is hurt and sad. Should I just knock it off?

Thanks for your wisdom.

Tonya

[Believe51]

When Ed and I speak of the tree that is planted near our graves, my Mother-in-Law thinks we are morbid. So we have learned not to speak of such things around her, she cannot handle anything of the sort. We are so proud of the idea that we have the plot and tree all planned to specs. It hurts, yes it does, to have to make these plans with my favorite human being. But it did take time to get to the tree decision, all in time, all with baby steps. Believe me, getting to this decision took time.

Athough there are times I know I cannot stand another word, I listen and plan, but sometimes enough is enough just for the moment. It is part of his wishes to make sure things are settled in case that time comes. Although it pains me badly, I trudge forward until I need to stop and focus on other things.

I have found it helpful to ingest what is in front of me in bite-sized pieces. Sometimes he knows when enough is enough and leaves it to rest for a while. Planning for ones loss is the worst conversations I have ever discussed, yet inevitable even when cancer is not involved.

I can see the joy is his eyes when something else is planned, he is relieved and content. I, however, am sometimes left feeling alone already. Pain, hurt, feelings of loss that has not happened yet overwhelm me. The world seems to stop for a moment as I try to face reality....just until I catch up.

Ed and I do not have any small children at home, only a 4 yr old granddaughter to consider, big difference. She knows he is sick somehow but we do leave her in the dark and can keep her out of these conversations. I cannot even imagine how it must be to discuss children & affairs of such; my heart goes out to you for I can barely focus on Ed and myself during these emotional discussions.

As a caregiver who wants to provide the best closure for my husband, it is not his job to know when I have had enough. I must speak what I need too and he must respect those wishes. Small bite-sized pieces, little by little may help him swallow what is being worked on. Maybe focusing on one topic at a time would help, ex: focusing on a cemetary & burial plot. Next week may be the perfect time to talk about the tree and stone. Although part of the same topic, small pieces....easier to swallow. Another thing maybe you could mention is the fact that these things need to be planned for he could be the one hit by the bus. Do not, however, knock it off. Take your time and plan what needs to be done. With time and patience, hubby may feel the same way as we do about the tree. Give him time too and he will catch up, Tonya. Let him ingest what is being fed to him, digest it, move on to other topics.

Good luck with your planning and please follow up on this topic. It is healthy for me to learn about how the patient feels about this subject since I already know how I feel. Lots of love>>Believe51

[Mary Anne in TX]

My guy doesn't deal well with the discussion either. I have this thing about being in last hour times and not wanting to talk about anything but the "what I love about yous"! I don't want to worry about all the detail stuff then. It could be him or me. Who knows what will happen to us! You've made me think that maybe I'll just begin to write things down and try seizing the moment when it presents.
Wishing everyone well, ma

[Yorkiegirl]

I know for myself, I have already taken care of every detail, and I mean everything. My husband let me do this, as he knows that I am a planner. So when my time does come no one has to make any arrangements except to call and have me taken care of according to what I have already paid for and this does include my beautiful Urn. My husband understood that I needed to this. As I was only thinking of him.

When my Mom passed away 15 yrs. ago, my Dad didn't want to deal with any of the things before hand, and it was a horrible to get things together.

There is also a book I can recommend it is called Final Journeys by Maggie Callanan and also her other book called Finial Gifts.
I highly recommend these books to read. It may be hard for some to do, but I found alot of comfort in them. All of my questions have answered and if your Significant Other would read it, in there own time I am postive it can help.

I wish you the best.

[Colleens_Husband]

Dear Friends:

I don't think there is a one size fits all solution to the what ifs. The what ifs need to be taken care of before you are devastated by loss, not after. I think you need to deal with it when the patient can take it. If the patient is sick with chemo, then that is the worse time. You need to pick a time when the patient is in good shape mentally and physically. And maybe all the what ifs aren't going to happen in one conversation. Maybe the patient can only handle talk of updating the will and nothing more. Its up to you to get as much accomplished and then be quite before the patient is overrun emotionally.

Finally, as a caregiver, your number one mission is to do no harm. If talking about the what ifs is going to cause the patient to lose hope, then it is better to say nothing.

Luckily, Colleen was the one to bring up the what ifs and we got our will updated and in order. We have some more things to work out, but that cn wait.

Anyways, great thread, Tonya. It is a subject that needs to be brought up and discussed.

Lee

[loveher]

wow, thanks for the insight. my mom never discusses the what ifs. i've alluded to it in conversations but she'll just say that nothings gonna happen anytime soon. so i guess i should just not bring it up ever?
also my brother's nine and he's totally kept away from this as much as humanly possible. i think its the right thing to do, some people disagree with me.

[BonnieR]

Tonya, if it is painful for your husband to discuss maybe you could at least feel better by writing it all out. I have always had a folder with some guidelines written in it. Not terribly detailed really, but something to give my husband some direction and ideas. Even has a list of things to give to different people. We dont have children to consider though. Anyhow, for your peace of mind you could put it all in writing now.

[Believe51]

This thread is helping me to look at so many things and I really hope to hear more from caregivers. Thanks>>Believe51

[PORTER1]

my husband do not want to discuss the what ifs, so I don't. i just take care of it Audrey

[Bill]

Nicola wanted to discuss certain details, and I listened, but was reluctant to discuss anything involving "failure" to beat her disease. I guess I was in denial. She wanted to go pick out her burial site, etc., but we gradually put things off until the next day, when she might feel better. That never really happened. She didn't want me to have to deal with things alone at the last minute, but that's the way it worked out. It's best to discuss and deal with those issues early on, when everyone is strong and clear on what they want. Most men don't want to consider failure and loss, so it's easy for us to put those things off until the next day, but that really doesn't help.

[Colleens_Husband]

Bill:

I'm not sure 'failure' is the right word or at least it is not the right feeling. Being negative and pessimistic may actually have negative health consequences. Hope is a valuable tool in fighting cancer and I really wouldn't want to take that away from anyone. Remember, as a caretaker your first duty is to do no harm. Are you really in denial if you know there is a possibility of a bad outcome, and you instead choose to make every day a precious thing with the one you love?

I remember reading a survey conducted at the University of Washington Oncology Center about the outcomes of all stages of cancer versus whether the patients believed they were going to survive or not. The results were that survival rates for people who believed they were going to survive, even those with stage IV cancers was much higher than those who didn't think were going to survive. Hope had a positive and measurable effect on the biology of cancer fighting.

So Bill, I would like to think that you weren't in denial. I think you instinctively made a good and altruistic choice in which you made the most of your time with Nicola, and in exchange you brought on a bit of anguish to yourself, in that you had to make some hard decisions when you were isolated, alone, and in anguish.

God forbid any of us are in your shoes, but if we are, I hope we would be brave enough to make the same decisions you did.

[Believe51]

Here, Here!!>>Believe51

[Faith in Him]

Bill,

My heart went out to you when I read your post. I guess I am coming from a similar experience. My father was dx with lung cancer and within two weeks he passed away. It was a huge shock. He was 43, my mom was 41 and I was 17. My mom was not able to make certain decisions so I did at such a tender age. I look back on some of those decisions now and I am not sure I made the right choices. But you do the best you can.

I do not want to leave my husband with all those decisions. I just want him to focus on his and the children's healing and well being. I guess that is where I am coming from. I have decided to write it all down in a journal so that if need be, he will know what to do.

Tonya

[Bill]

Thanks, Lee, Marie, and Tonya. Nicola wrote down some Bible passages which really helped, and some songs she wanted to have played. Tonya, the journal is a great idea.

[Mary Jo]

Can I chime in on this post? Ok, thank you....I will do just that.http://her2support.org/vbulletin/images/icons/icon7.gif I just wanted to comment on the journal idea. Tonya, I've kept a journal since shortly after I was diagnosed. I don't write in it nearly as often as I use too but I wrote many very important entries. Especially "letters" expressing certain feelings and prayers that I have for my family - how I felt/feel through this experience.....how my faith has grown etc. Also, in this journal, in the back I have bible verses that our special to me - songs that are special to me - that I would want "if" I go before my hubby.

Anyway, that's all...just wanted to say the journal is a great idea and a wonderful outlet for you as a way of expressing those feelings you have bottled up inside. I kind of wrote/write the entries as if I am speaking to God...well, I am speaking to God.....the entries are like prayers.

Ok, I'll shut up now. Hehe.

Mary Jo

[juanita]

i don't have any plans made except for a list of songs and a few poems. but i have big manila envelopes full of letters to my husband and all 4 kids and 2 grandkids that i add to occasionally, like the days the grandkids were born telling them what they mean to me. my husband doesn't want to hear the what ifs either.

[Believe51]

Juanita, I love the letter idea. Ed has filmed himself recording songs he wrote for me. He also taped a special message just for me. Hope it is a loooong time til I watch that. How special this thread is. We have a journal and I am going to use excerpts from it when I write my book, or should I say finish my book!>>Believe51

[Jackie07]

When my Mother-in-law's health was declining, she persuaded my Father-in-law to buy long-term care insurance. They also picked up the plot and discussed about funeral arrangement. A little more than a year later, she was admitted to the nursing home after a brief hospitalization for congested heart failure (10 years after her triple bypass surgery.) She went to the nursing home to 'recuperate', and stayed there the past 3 1/2 years because of Alzheimer's.

My Mother-in-law passed away Monday morning in her sleep.

My Sister-in-law arrived at 12:30 am and relieved me from the nursing home. My Mother-in-law never woke
up from her sleep after I had left. That made me the last person to have a conversation with her. And it was the first time for me to experience a family member's death. We were glad that all the suffering is over and she had gone in peace.

Please keep all of us in your prayers. As we celebrate her life, we also grieve her passing. Just a couple of
years after I was married, I gave her a small heart-shaped frame that reads: "My Mother-in-law by chance, my friend by choice." I have lost a dear friend. And I'd like to share my grief with my other friends. Thank you for your prayers and support.

[Bill]

Jackie, I'm so sorry to hear of your loss. Please know that you are in our thoughts and prayers.

[GemmaG]

Hi,
I know it's very hard. I've been planning to do this for myself. I'm divorced single mom with two young children aged 9 and 11. I don't want to leave a burden to my family. If I arranged everything now, all they have to do is to call the funeral service to pick me up. It may sound morbid but it's reality.
I love all of you here. You guys are my second family. When I'm down, all i have to do is log on to this heavenly site.
All my love.

Hugs,
Gemma

[Jackie07]

Thank you, Bill. And Gemma, my heart goes out to you.

I just got off the phone (international) with my 2nd Sister. We talked for over an hour because she couldn't reconcile the way my parents treat each other.

My father is 93 going 94, my mother is 8 years his junior. They've been married over 60 years. And my Mother started a 'cold war' three years ago when my Father brought up the idea about getting a divorce. She couldn't forgive him even though he had tried to appologize several times. Now his health has improved, he's going back to his old self. It is hard for my siblings to understand and to 'stand' it when they were over there (at least one of them each day even though there's a living-in housekeeper.)

It hurts my 2nd sister and 2nd brother to no end. (And my oldest brother and 3rd brother, but they are still working and don't go over there as much.) Of the six children my parents have, the middle two have the most trouble growing up and they seem to stay in a teenagers mindset and could not understand or accept human nature. They both spend a lot of time visiting my parents. But they both got upset after upsetting my parents.

Caregivers are angels. The best model I've seen so far is my Sister-in-law. I think it is because she is a professional ( a nutrition professor and self-employed nursing home consultant) and she takes care of things in a professional manner. It helped that she's clear-headed when everyone elses seem to be losing theirs.

She went to the nursing home and took care all the business when my Mother-in-law passed away. She got instruction from my Father-in-law and always stayed there longer than she had planned. She wrote all the thank-you notes and made goodies for people who took care of my In-laws. She always expresses her appreciation toward me because I have helped by cleaning up the house and take care of the laundry and dishes while she did the cooking. And I have never complained about my husband's spending time over my In-law's place.

Jack has not been working the last 5 years. He is under tremendous pressure (by himself and our financial reality now that I can't work) to get a job soon - but tomorrow he needs to go take my Father-in-law (2 hour round trip) to doctor's appointment.

Yes, caregivers are angels. "Thank you, thank you, thank you."

[juanita]

so sorry to hear about your loss. i'll say a prayer for your family.

[Jackie07]

Thank you, Juanita, we appreciate it.

[Colleens_Husband]

Jackie:

I am so sorry to hear of your loss. You will be in our hearts and prayers.

Would it be possible at some time to share with us what preparations were helpful and what you wished would have been taken care of with your mother-in-law? Not right away, of course, but when you are able to share with us.

Lee

[harrie]

Hi Jackie,
I am so sorry to hear about your mother-in-laws passing. It sounds like you have some very compassionate loving people in your family.

Gemma....I really like your pics! You are SO CUTE!! You look great in your beanies!

Maryanne

[Jackie07]

Lee,

I can only tell you what I know, which is not much.

My Mother-in-law purchased long-term care insurance a couple of years before she was admitted to the nursing home. According to my Father-in-law, the anuual (?) nursing home cost was $25,000 (or 35,000?). Medicare took care of half. And the long-term care insurance paid for half of the other half. Deducting the premium he had to pay the insurance company, he saved about half of the money he was to pay out of pocket (about $3500? or $7000? I just can't remember.)

Me-Mother (that's what her grand children call her) had had a triple by-pass surgery in 1993. The day she experienced her symptoms - indigestion - the four of us were on our trip to San Antonio for my citizenship ceremony. Early next morning my Father-in-law called and said that she had a heart attack and was being taken by the ambulance to the hospital in our town.

She had had a car accident not long before the heart attack. So we thought perhaps she'd got problems then already. After her heart surgery, this retired special education teacher continued to sell Avon - known as the 'Avon lady' in the area - with my Father-in-law's assist. She eventually got back on the road by herself until her cognitive ability started to decline in the early 2000's.

It was around 2002 when she purchased the long-term care insurance and picked up her coffin - the 2nd cheapest available in their local funeral home. (Trust me, they were smart because at the funeral you can't really tell any difference because of all the flowers and the interior lining. And the funeral home staff 'buried' her while we were back in the fellowship hall visiting with friends and relatives after the grave site service.)

There was a memorial service at the funeral home chapel. The family members were sitting in a 'hide away corner' so most visitors couldn't really see us except people on the front row. (My Father-in-law sat in the left end and was completely hidden. And at the end everyone walked by very fast passing the coffin without glancing our way when they paid their last tribute.)

The funeral home provided everything: a planner including guest registry, duplicate cards of all the flowers sent, blank thank-you cards... There were 2 policemen leading, directing traffic. And there must have been more than half a dozen 'men-in-black' taking care of the prosession. If the so-called pallbearers had lifed a finger, I did not get to observe it.

My In-laws live in a close-knit small community. Their church members are either their relatives or their former students (or teacher) or neighbors. One of her Avon customers came and my Father-in-law made sure to bring something to her afterwards. A couple of relatives and former students came from out of town after they read the obituray on their local paper.

My Sister-in-law, along with her children, made a poster board with pictures of my In-laws. In the center was a poem written by her youngest daughter. The pastor didn't talk long because my Father-in-law never likes long sermon. (The preacher used to be my In-laws' student, so he knows how to conduct a perfect service.) The former preacher's daughter came from out of twon and sang 'one day at a time'. Her Mother (now 92), who lives nearby and used to be my Mother-in-law's high school teacher, was not present.

Neighbors and friends brought all kinds of dishes, mostly cassroles - a tradition I am not sure still prevalent else where.