Don't know where something like this belongs but would like some input on a few things. First, my wife has been given a time frame of something like a year, we will continue to fight that battle with treatment and everything else we can throw at it but I also want to make sure that we have things in order. We took a little mini second honeymoon a few weeks ago and it was the first time she mentioned life after her when mentioning that she thought one of her rings should be given to a grand niece. I was a little caught off guard and not prepared to discuss any of the things that I figure we will discuss somewhere down the line. As a caregiver, when did you discuss the tough things like where would you like to be buried, what type of service, who should officiate, cremation vs internment, etc. Although we have worshipped as Lutherans since we have been married, she is still Catholic. Are there Catholic beliefs that would require a Catholic burial or having a priest officiate, perform last rites? In this day and age is a will necessary if we have been married for 24 years and I think everything is in both our names?

A will isn't just "necessary", in my view it is mandatory. I was a banker for 33 years, and trust me, there are few things worse than dealing with someone who died without said will.

One day about 6 months ago, I sat down and wrote out a list of what personal items I wanted to give away and to whom. I went over it with my husband and I EXPECT him to honour it - even though it is not part of my formal will.

I would encourage you to sit down and in a calm and matter of fact manner make this type of list with her. I can't tell you how much better I felt once the list was done. Sounds odd, maybe, but somehow you rest easier knowing your ducks are lined up.

I would also HIGHLY encourage you to explore with your wife any items that maybe she has always wanted to do but never has. I would also refer you both to a book titled "Chasing Daylight". It is the story of a CEO who was told he had 3 months or so to live and how he proceeded to spend that time. I have read it a couple of times. It is an awakening about how each of us spends our days and about how - especially with limited time - we need to spend it carefully.

I know if I was told I had less than a year I would certainly be on the next plane out of here to fulfill some travel dreams of mine.

Donna

Don't be afraid to discuss these things with her - she obviously wants to talk about it. I think it only frustrates the "patient" when others will not talk about realities. But, just my humble opinion.

Hi Tom
making a will was something rob had never done,and never really thought about.The day he got his terminal diagnosis,he had me ring a solicitor and she came to the house.He dictated his wishes to her and i am so glad he did it straight away,because a few days later his voice had all but disappeared and he was zoned out with morphine pyschosis,and they wouldn't have been able to do it .When he went into the hospice and he was sorted out with meds etc,we talked for many hours about his funeral,the music he wanted,where he wanted to be buried,what he wanted every one to wear,the wake,his personal belongings,what treatment he wanted,what measures he wanted regarding resucitation and best of all he opened his heart about his feelings.it was surreal really,that he could be so matter of fact about it all,but when he died,it made one part of my life so easy,because all i had to do was follow his wishes.

For people who have more time than we did,i think they are happy to get these things done and out of the way,and then they can concentrate on making the most of those weeks/months they have left together.
I am sure that for most people who have been where you are its one of those things hard as it may seem,thats better done sooner than later.

love liz

My husband was never one to talk about this stuff but when his scans started going from bad to worse I forced the issue. We went and had BOTH our will made out which is something we should have done when the kids were little. At the same time we had living wills and powers of attorney drawn up as well. These have to be done if Hospice will be involved at some point. It made things so much easier when the time came.

As for final arrangements such as burial and funeral, I brought these up in a casual way. My husband was spritiual but not religious as he had been divorced and was concidered ex-communicated from the RC church. I really had no idea what he wanted and I'm glad I asked. He wanted to have a full funeral service and to be buried in the same Catholic cememtary as his grandparents. I went and purchased a plot about 6 months before he passed. I also pre arranged the wake about 2 weeks prior. A friend of mine who had lost her young husband advised me to do this ahead of time and it was good advice. You will be so scattered when the time comes and knowing thses arrangements have already been made is helpful.

Please feel free to ask me any questions in this regard. I found it to be comforting in a strange way to be able to talk about this as I am a planner and this disease really has no set plan, as we all know. Best wishes for peace for you and your wife.

Preparing a will can certainly be dictated by the amount of assets she owns outright. Assets already held jointly pass directly to the joint survivor. You can make things easier now if you get added to all bank accounts, credit cards and any safe deposit boxes. Quick Claim Deeds can also be used as a cheap quick method to transfer ownership depending upon your circumstances.Some states, including Fl allow a handwritten will, called a Holographic Will. It's intended for simple wills. Check your state and also check the Rules as they must be strictly adhered to make it valid.

Now is the time to start to pull out all insurance papers, identify all belongings, understand all final wishes, etc. I wrote my wife a "letter" telling her everything I think she would need to know if I were to quickly pass away. I did this several years before my cancer. Something like this, including any testamentary wishes needs to be reviewed periodically to make sure it's current.

Depending upon your lifestyle complexity a lawyer who specializes in trusts, wills and estates is always a safe bet. Also a CPA can be a must addition to the Team.

It's not just a will you need. You also must get Power of attorney and living wills. Also make certain all bank accounts, CDs, 401ks, insurance policies at work etc. have a proper beneficiary. Keep small bequests like jewerly out of the will unless you expect a challenge or they will have to be appraised and tax paid on them. Have her make a list of those type of bequests and give it to you.

Really folks, anyone of us could get sick or run over by a truck anytime. Don't laugh, I almost was. So we all should have these documents now, not wait until we get a dire diagnosis.

Take care,
Eileen

Eileen is absolutely correct. ALL of us should have a properly and legally prepared will, at the very least. Life is fragile and it's all too easy to die an accidental death, let alone cancer. Avoiding probate is key because the court will take 15% off of the top of the total value of the estate.

If real estate is involved then a revocable trust is the way to go. It will include the trust, will, powers of attorney and advanced directives. A paralegal can typically prepare it for far less money than an attorney. It can be easily updated. Power of attorney, in a will, is typically only applicable if the individual has become incapacitated or dies. Bank accounts need to be done individually at the branch where your signature card is on file. You both need to be present to do this.

You can specify every detail of your estate and it's disposition. It can save a lot of family pain and infighting later.

If the trustee dies, it's easy to transfer the estate to the sucessor trustee yourself, even though attornies will want to charge up to a $1,000 for doing it. (I went to the county and transfered my fathers estate to me for a whopping $60 in paralegal fees and a $50.00 county deed of trust transfer.)

My wife and I have also discussed our last wishes, burial, cremation, memorial, celebration or funeral arrangements. It sounds gruesome but it is a discussion that you only have to have once and it is a relief to get it over and done with.

Thank you all for the input. I think I just find it difficult to do, that it is easier to ignore. By talking about it and making a will is almost like admitting that barring a miracle, this is going to happen. I did mention to her tonight that we should sit down and make out our wills and I can probably lead that into a discussion of everything else.

Thanks again, you all have some good advice as usual.

Hi Tom,
First of all, I am sorry that you are facing losing your wife of 24 years. My husband and I would have had our 25th in November if he had lived. I don't have the answers to all of your questions, but I can tell you that you do need to sit down and iron all of this out now! When Ron got his last diagnosis in April, I think that is when he finally really accepted that he would not be cured. So we went to the lawyer and had his will redone, which involved a lot since he was a farmer and his nephews are now buying his shares in the corporation. This will give me a monthly income for 20 years (or transfer to our kids when I die). Just a week before he died he let me know that he wanted to be cremated and did not want an open casket for a viewing. One thing I will say is that if your wife starts to tell you who she wants to have certain things,please listen and write it down. My husband one day started to tell me that he wanted our daughter to have a certain gun of his (he was well armed!), but just the thought made me cry and I said that we had to do that later. Well, we never did get around to it again. He passed away quite a bit sooner than any of us expected. So I feel a bit of guilt about that and hope that he would have been okay with the things I did give away, like his Harleys and guns to certain family members. It is not a pleasant thought or topic, but it must be done. Also, you must have a Power of Attorney for Health Care or your wife should have a Living Will. This is very important. We also had an evening of signing car titles and motorcycle titles. Again, my sympathies to you.
Lori

Hi, Tom,

I am so sorry for what you are facing. I can imagine how difficult it is to have discussions about wills, end of life issues and so on when you are actually facing this. My sister-in-law died of cancer (in her 40's) and my brother asked her about burial versus cremation the day before she died which was really difficult for him but they hadn't discussed any of these things for the very reasons you've mentioned. My sister-in-law was raised Catholic but joined the Presbyterian Church when she married. However, Catholicism was very important to her mother and for these reasons, the service and burial incorporated both religions. My sister-in-law (another one) is a Catholic parish nurse and she can give last rites (don't recall her "title" which allows her to do this as I am not Catholic) and does the most beautiful end of life ceremony involving family and friends with the individual who is passing. If you're interested in learning more, please contact me as she lives in Minnesota as do you and she might be able to help you locate the Parish nurse for your area. Most of her ministery is with end of life issues and she is very helpful to family members as well as the individual who is facing death. She helps family members talk about the very issues you are raising.

My thoughts are with you- Sophie

If you want everything to pass to each other, you need a survivorship will. The one that passes 1st leaves everything to the survivor. It's legal and easy.

Thanks all. We did sit down and discuss it last night. I think it was Tuesday night I downloaded some sample wills and created my will, then went through that with her to find out her wishes. I maybe wasn't able to discuss everything I wanted to but we made it through enough, albeit tearfully.

Now my next problem. We have two dogs and Pam is wanting to adopt a third dog. Over the past couple of months, I have been able to put this off. One of the ways I have used is that I would consider fostering a shelter dog to see how it would go. Well for the past five weeks, we have been fostering rescue dogs. The first attempt was with two minature pinchers (yes, a total of four dogs) that after three weeks I forced finding another foster home for them because they were too much with Pam spending three days in the hospital with an infection. Within two days we had another foster dog. I brought up this situation to her MO at her last appointment and basically asked for a prescription stating no more dogs. The MO agreed saying that she should be using her energy and time for herself, her family and traveling if possible. At the time it sounded like Pam would take a break for awhile after this foster. Now a week later, this foster is getting adopted and Pam is talking about getting another dog, and then take a break in the winter.

My question is what do I do? I know she is enjoying taking care of these dogs, that it gives her something to get up for everyday but am worried that she is spending the last of her "healthy" time taking care of the dogs. Do I just go along with her wishes (which I am probably inclined to do) or be more blunt stating my worries that by winter she may not be up to traveling? I have suggested possible trips including Houston or New York to visit cancer centers. Her response has been that she isn't ready to check out other treatment yet, but again I am worried that she should seek other opinions while she is still strong. From reading some others experiences, it seems like once health starts to fail, it can go fairly quick.

Would appreciate anyones thoughts or suggestions. Thanks.

Hi Donna, thank you for sharing your thoughts. I know since this ordeal began, Pam has asked very few questions and often times seems upset at all the questions I ask. I don't believe she has ever heard or recalls the timeframe. I know it has been mentioned by her doctors in her presence but they usually follow up with there is hope that treatment can extend this time and keep fighting. Best of luck to you in your treatment and God bless you for lending support to others.

Tom

Tom, this is a very difficult decision to make. I love my dogs very much and take great pleasure in having them. My dogs are my companions and follow me from room to room. I talk to them all the time, they make me laugh. On the other hand, they require alot of work. Its not going to be easy but I must give them up since I know very soon I wont be the owner they deserve. This breaks my heart more than most people could understand.

In your situation, it would be very difficult to have another dog. Your wife would get attached to it. It would take alot of her strength but also bring her much comfort and joy. The big picture is her health is the most important thing here. I dont know what to say to her about not getting another dog. I do agree with your reasoning. When she starts not feelign well, she cant take care of the dog and you will need to take care of her.

I wish you the best of luck with everything you both are going thru.

Thank you Christine, wish I could offer some wise advice about giving up a pet but even giving up these fosters that we had for three weeks was like ripping our hearts out. Our current foster is being adopted by Pam's sister so that should make it easier but Saturday the house will still feel empty. If it is any consolation, know that if you do not know anyone that can take your dogs, there are rescue organizations that place all dogs in homes rather than a shelter while they wait to be adopted. The volunteers that we have met have all been extremely nice and concerned for the well being of all the dogs.

Wishing you the best in your treatment and a milkbone for your dogs.

Christine! Are you sure you have to give them up? I'd think they'd be so much better off staying with their Mom, even if you can't give them their usual 150%, than sending them to live with strangers.

Christine-Are you having second thoughts about your fur babies?
Let me know if you want to keep them with you for awhile longer. I'm flexible if you want more time with them or if you want to keep the little one. I can come back at any time.

Sue

Tom,

Take it from one with tons of experience in matters like this....go with her flow. I have found the harder I resist the more determined my wife becomes and eventually I always give in so resist less and give in sooner or don't even resist at all and save both of you the hassle. Geez I sound like a beaten man.

Just a little updating and whining but figure this is the best place to vent.

Well, in the last two months (time is flying by much too quickly), we have managed to get through most of these tough topics. We have made out our wills, discussed cemetery plats, other funeral arrangements and bought Chasing Daylight. We have just received our passports and I have asked Pam to research a trip for November or December. It will be the first time she has ever been out of the country and the same for me except two visits to Tijuana while visiting California as a kid. David, I have been obeying well, trying to cave whenever possible. Thankfully, the cancer has been spreading slowly so far. About a month ago I cornered her MO worried that it had been four months since we had been told that we could be looking at ten months to a year. The MO did say that Pam is doing better than most of her patients with Pam's diagnosis. Her PET from last week came back with most areas stable with a little more uptake but that there was a new area in her lungs that came back cloudy which had previously been clear. The MO said that it was not clear if this was cancer, an infection or something else and that she would suggest going ahead with the scheduled chemo treatment of Taxotere now and do another scan before the next treatment in early October. At that time, depending on the scan would suggest possibly going with Cetumab(sp) or that there may be a couple of studies opening up. The MO has said that Pam has received as much Cisplatin as is deemed helpful and has had Taxotere, Taxol and Carboplatin in the past without too many side effects. I have tried searching the internet on trial studies but can't seem to make sense of the information given as to benefits/risks of the studies.

On the emotional side of this, Pam has been holding up well but has picked up many new characteristics. She has never been much of a shopper but now is constantly shopping either on-line or at stores for all sorts of "wierd" things. She usually seems the worst around chemo time when she is taking steroids, staying up all night making plans to remodel the house and making a "honey-do" list that would take years for me to get through. Her comment last night wa that she was going to get this place ship shape before she kicks off. I have asked her to make a list prioritizing what she would like to do from trips to things around the house but she has been hesitant to do anything other than keep adding to the list. I guess I have a couple of questions about this behavior. I guess I am having a hard time putting much energy into remodeling when I would much rather just be spending time with her, sitting around the house or traveling. I feel this time should be spent how she wants but am having a hard time believing this is it. Have others experienced this as a phase that the person with the cancer gets through or is this more of a permanent change from the treatment/circumstances?

OK, done whining,will gt back to tiling the laundry room and get ready to scrape/paint the house. Thanks for listening.

Well, Tom - your wife is doing something very similar to my husband. Instead of making me a "honey do" list, we bought a fixer upper and he remodeled it from the ground up, moved walls, a fireplace. Don't tell her or she will expand her list. I think this is their way of feeling like they are getting things done. Jim was on chemo and all kinds of pain meds, but managed to run his crew for 9 months and damn near ran them into the ground. They figured that if he could do it while taking chemo and being on crutches a lot of the tiem, then they could do it being healthy. I tried not to complain, but it was hard - it was 105 degrees in the summer and then freezing in the winter. But he got it done and we moved in in January. The house is beautiful and he seems very content and proud that he has put me in such a beautiful home so close to my job. They need a distraction, but it sure wears down the caregivers. Hang in there - Jim and Pam are about on the same track with treatment...take care of yourself.

Hi Tom

sounds as if you are doing a great job and i am so pleased Pam is holding her own.
Rob stunned me by going into manic "must do mode" virtually from the minute he was told he was terminal.Of course his time scale was very short ,but he guessed what was coming and had been thinking about things for a while before he knew for definate that he wasn't going to make it.Just two hours after we got back from the hospital he bought a VERY expensive bottle of brandy,got two glasses sat me down and then just said "this is what i want you to do"It was quite scary really.Within 72 hours i had sold all his tools,his van,given notice to the landlord ,arranged for a solicitor to come to the flat to make his will,started clearing cupboards,packing every thing up arranged a visiting roster for people to come and say goodbye and he even wanted me to clear out his clothes which i absolutely refused to do.It seems as if the compulsion to leave everything "in order"is quite normal and i suppose all those nagging jobs she wants doing are her way of tidying her life and making sure she is leaving everything the way she wants it with no loose ends.Like david says i would go with the flow and even if it goes against the grain as she gets weaker you should get plenty of good one on one time for just you two.

Wow, it couldn't have been said better...thanks Liz; Now I get it; Jim is doing the same thing I guess - tidying up. You are awesome!
Hugs - Paula