Have I taken the wrong tack on this?

[Larry's Wife]

Hi all,

This will be a long post. Follows is an email I sent to Larry's out of state brothers and sisters today. One of the daughters is suffering from "buyer's remorse" over previous decisions we have made regarding end of life care for Larry. I'm feeling shaky about it, even though, in my heart, I think the email is appropriate. It took me three hours to write it. I tried to take all emotion out of the picture. What do you think? I really need some objective opinions here. I can back off if I should:

We got the results from the brain MRI and the news is not what we had hoped for. I have included the summary here:

Scanning through the brain was performed demonstrating innumerable lesions scattered throughout the brain involving the cerebellum, vermis and numerous foci scattered throughout both the right and left sides of the brain all the way up to the high parietal region on the left. There is no evidence of any hemorrhage. There is some surrounding edema involving the cerebellar lesions on the right which are much more prevalent than those on the left. The largest on the right is 31 mm in maximal diameter. The lesions within the brain parenchyma and supratentorial region are all a centimeter or subcentimeter in size. There is normal signal flow void in the arteries at the base of the skull. The seventh and eighth cranial nerves are unremarkable. FLAIR sequences demonstrate increased signal about the lesions within the brain and some mild scattered increased signal which is nonspecific.

Conclusion: There are numerous lesions about the brain most prevalent in the cerebellum most prevalent on the right. The findings are consistent with diffuse metastatic disease.

The MRI was ordered because Larry could barely walk on Tuesday. He was and is very weak and unsteady on his feet. He is using a cane which helps him a lot, but even with that, he has severe vertigo and will hold onto anything available to steady himself. He took a fall on June 12th but did not injure himself, thank God. He just tangled his feet and down he went. He sleeps more and more. He has no energy. He has no interest in leaving the house anymore. It just takes too much out of him. He has been in increasing pain and is now taking long-acting pain medication. This seems to be working. He has not taken any breakthrough pain medication for over a week now. His appetite is still good. But he has had a slow but steady decline in his energy level over the last couple of weeks.

We had planned to meet with the doctor on Thursday to discuss the MRI results, but Larry was not up for the trip, so we spoke on the phone and I picked up the report. Although I don’t have all the details (type of chemo), the doctor spoke about our options. Unfortunately, Larry cannot have the “gold standard” treatment (whole brain radiation) because he had a portion of his head radiated when he had the non-hodgkin’s lymphoma. We consulted with a radiologist months ago about it. In Larry’s case, because we cannot determine the previous treatment field from so long ago, the risk vs. benefit is too great. So, our only radiation option is to try CyberKnife again. This is a pin-point accurate treatment, so they would only treat a limited number of the lesions. Our chemo option is to stay on the Gemzar that he has been on for two cycles already or to try another chemo. Most chemotherapies do not cross the blood-brain barrier, so chemo will not necessarily help with the brain lesions. And we have the option to discontinue treatment.

Larry and I have briefly discussed these options. But he has not made a decision. So, as it stands, we have increased his Decadron dose, which might help with the edema and give him some strength. We have also added Antivert to help with the vertigo. We have a scheduled appointment on Wednesday the 25th to meet with the doctor and to begin his third course of Gemzar (or a different chemo as the doctor recommends). So I am not pressing Larry to talk about things he doesn’t want to talk about right now. We have a few more days before any decisions have to be made.

Now, for the part I find most difficult to say. The girls and I feel confident that we can take care of him with the assistance of our Hospice team. And Larry moved into the guest room a few weeks ago. So I ask that you not make plans to come and stay with us. We are trying to keep things as normal and restful as possible. Now, please understand, I am not saying that you cannot come to visit. If you feel you must come, come. But visits need to be limited so Larry can rest when he needs to. Visiting wears him out and he does not have the energy to spare right now.

Honestly, I do not mean to sound harsh and it is not my intention to deprive anyone of precious time with Larry. But I need to do what is best for Larry. He is my only concern.

And I encourage you to call him anytime you wish. I am sure he would enjoy speaking with each and every one of you. He is still Larry, just not the energetic Larry we all know and love.

Larry and I love all of you. I am so sorry things have come to this. If I have offended you with these decisions, I sincerely apologize. Please know that I love Larry deeply and I promise you that I have been and will continue to do everything in my power to keep him comfortable and happy.

I am no longer working, so you can call me anytime if you want an update or just to talk. I will continue to give mass updates by email. I have Donna and Bill’s email and Lynn’s email at work. I do not have Chuck’s, so I ask that someone print this out for him, and also for Lynn since I don’t think she is working today. If anyone would like to be added to my list, just give me the address and I will include them. Please email me at llfuhrman@wildblue.net I have Larry’s email set up to forward to me, but it seems that it does not always work. I check my email several times during the day.

Love,

Lynn

[CaroleHammett]

Lynn:

I think your email is very well written, but I do have one question: Are you telling them that it's okay for them to come visit so long as they are not staying in your house?

That's what it sounds like, as if he couldn't handle overnight guests, but could handle brief visits, so long as they're staying outside the house and just coming over for short periods, but I wasn't sure, and think maybe they might not be either?

Carole

[deb10653]

I think you did a very good job on very tough subject but I agree that the visiting is a bit vague. Do you want them to travel and stay elsewhere but come and visit for a few days? I do not think they should be offended but I'm finding myself that words can be taken in a lot of ways through e-mail and phone when it comes to family away. You are doing what is best for Larry and in the end that is what they should care about.

Deb

[RandyW]

Lynn I think you covered everything. Just make sure to clarify visitation schedules and that family and friends from out of the area please look into lodging in the area..

could not have said it better though. And remember risk of infections can be fatal fro germs from visitors. Got to avoid those nasty germs as much as possible at home!

(((((((((((((( Hugs Prayers and Positive thoughts For Ya both)))))))))))

[jaminkw]

Lynn: I agree with Carole. I think your email is very appropriate. Perhaps Carole is also right about spelling out the boundaries very clearly. I'm not sure how to suggest you do that, perhaps lead in with suggestions of where they might stay? I would also spell out that they come in as small family groups as possible.

I'm really responding, Lynn, because I want to commend you for taking charge in Larry's best interest. This past winter two couples, my husband's family, came to visit. I was not as debilitated as Larry right now but I was doing the last of my big chemos. I was furious at my husband for not laying down the law and telling them not to come but admitted after a rant that in my heart of hearts I knew that even if he did tell them no, his brother and wife would have come anyway. They didn't even stay with us but it was way too much company for me and it made a tough time even harder.

People have to be told. They just don't get it. When a person is fighting this disease, it is all about that person. My hope for you is that they will listen, not give you a hard time, and let Larry set the pace when and if they do come. And I hope Larry is better at assessing his situation than I was. If not, just jump in and come to his rescue.

Grit your teeth and click the send button. It's hard but someone's has to do it and we'll be here reminding you that you did good.

Judy in Key West

[LovesLife]

Lynn - what a very difficult letter that was to write and you wrote it beautifully. I think, like Carole said, that perhaps you need to be more clear about what you want regarding visiting. If you truly feel it is detrimental and he has stated that he prefers no visitors - include that in your letter.

My SIL was recently diagnosed with very advanced Stage IV lung ca and we live about 6 hours from her. We had made plans to visit her today and in preparation for the trip we set up sitters for the kids. However, on Friday I called another relative who was with her at the time to see if she was up to a short 1/2 hour or so visit. She spoke to my SIL who said she didn't want any visitors. I wasn't the least bit upset and neither was my husband. To us , we respect her wishes and understand them. We don't know if we will get to see her again; however, we know that she knows we love her and that is enough. My husband and I also plan to write a letter and send a card letting her know what she has meant to us and say whatever might otherwise have been left unsaid. We realize that it is not about "us" ... it is about her ... as it should be about Larry right now.

My feeling is, that if they don't understand, you have done the best you could to explain the situation and the reasoning.

I am sorry that you had to write such a letter and I hope that once you press "send" you will not feel guilty about anything you said - you have absolutely nothing to feel guilty about. You simply love your husband deeply and you are trying to do what is best for him. You are a very wonderful wife and he is very lucky to have you by his side.

Take care,

Linda

[Larry's Wife]

Carole. You have hit the nail on the head. In my most diplomatic way, I have tried to convey that we cannot accept overnight guests. Larry forbid me to tell them that they would have to stay in a hotel, so, without saying that, I wanted to convey that we "have no room at the inn".

My intention is that they call me if they "feel the need" to come. In that case, the daughters have generously offered a place to "park".

But, the daughters and I have an agreement that I will serve as the family spokesperson. So they are not supposed to go behind me and offer accomodations. If I get a phone call saying "whoever" wants to come, I can offer accomodatations at either of the daughter's homes, but only after they agree to the terms.

My main concern is to minimize any stress coming into our home that will upset Larry. But honestly, I cannot personally tolerate any additional stress. Some of Larry's family tends to spark off the girls. And I don't have the focus right now to mediate.

[Larry's Wife]

I appreciate all the comments. But the send button happened before I started this thread. So, do I need to back off with the family or should I just wait and see what shakes out? Remember that the family lives 1400 miles away.

[CaroleHammett]

Lynn:

The letter was beautifully written. You did absolutely the right thing... for Larry, for the girls, for yourself and for his famly.

You have answered my question about visiting and in retrospect, I think it's good that you left it vague because that will require them to talk to you first before coming out in order to get clarification!

Randy makes an excellent point: that everyone needs to be reminded not to visit if they have any possible infection. My palliative care nurses actually left a package of face masks on a stand near my front door when I came home from the hospital last year, and everyone who came in--even if not ill--wore them, which I suspect may have helped shorten their visits--just due to the discomfort.

Also, I remember, like Judy, having visitors when I was seriously ill and it was just exhausting. I knew I should say so, but I was so used to a lifetime habit of "putting a good face" on things that I just wasn't up to it either physically or psychologically. Thank heavens Larry has you!

As Deb and others have written, this is all about Larry and your taking care of him, and as Linda and others have written, Larry is one very lucky guy! If I weren't straight, Lynn, I'd definitely want you for a wife!!!

Affectionately,

Carole

[SandraL]

Oh Lynn. You obviously spent a good deal of time writing that and absolutely took the right tact. Your interests are all in the right places. Now you just need to hold firm when and if people are planning to come. I am sure you know that others may simply not get it, and how could they. They simply have not lived through what you and Larry have. So just forgive them if need be and move on if necessary. My heart breaks for you. You are obviously a very strong lady. Take good care

Sandra

[recce101]

Lynn, you're definitely on the right track, and you've received excellent comments from some of our best and brightest. I'm glad that YOUR welfare was added to the discussion, because the welfare of the caregiver is often overlooked, especially by members of the spouse's family. It's not that they're being insensitive -- it's just difficult to comprehend the unrelenting stress of the caregiving role until someone has walked the walk. Much admiration and Aloha,

Ned

[Larry's Wife]

Wow! You guys blow me away! I get up this morning to find a whole bunch of love right here on my computer!!

Yeah, I'm sure some won't get it, so I'm glad the girls have offered to open their homes if necessary. And Carole, the masks are an excellent idea. I would never have thought of that.

Larry isn't going to tell folks that he is too tired for company or that it is time to leave. He just won't do it. So I need to be prepared to show my "inner lioness" and bare my teeth and claws! Hmmm...I just might enjoy that.

OK. That makes me giggle a little bit.

[RandyW]

And hand sanitizer cause people love to give hugs!!!!!!

[simplyklb]

"jaminkw"]

People have to be told. They just don't get it. When a person is fighting this disease, it is all about that person. My hope for you is that they will listen, not give you a hard time, and let Larry set the pace when and if they do come. And I hope Larry is better at assessing his situation than I was. If not, just jump in and come to his rescue.

Judy in Key West

Judy,

I feel a little bit different... I have two parents fighting this disease not just one. Someone, a cancer survivor, told my mom it was all about her. I set my mom straight after the person left. It's not all about you... It's not all about Dad. IT IS ALL ABOUT ALL OF US. I have a cousin who feels the need to come visit every weekend. I am sick of it because other family members allow it. He never came around before but now he comes around every weekend. I have told my family that I am sick of it. My dad is annoyed that the cousin comes around so much. Some people are welcomed as immediate family members. My dad is annoyed about a volunteer coming in once a week... That is for my benefit so I can get out of the house. Otherwise I am stuck here all the time. Actually I get a reprieve because I am heading down to Truman Lake for the long 4th of July weekend. My mom gave me her blessing. My parents should be in the recovering/good part of their chemo cycles. They will both have chemo the week of July 7th. It means a week off from appts. as I don't go to infusions.

Kristi

[jaminkw]

Kristi, I'm so sorry you misunderstood my comment. We were talking about family members who are not part of the caretaking system. I'm talking about people like your cousin who doesn't sound like he's part of the helping system. In that case, your father's wishes and yours as the primary caretaker should come first. In the case of the volunteer, I don't think it's right that your father should object to you getting help. In that case, you need to stand your ground that the volunteer be allowed to help unless Dad can offer an alternative helper that he would prefer.

I would be and have been a person who tells caretakers (my own husband included) they have to take care of themselves iin order to be able to be there for the person (in your case two parents) they are caring for. A large part of taking care of yourself is taking time off from caretaking!

Good for you. I'm glad you're getting a long weekend off.

Judy on the way to the Rancocas River