Hi Marty I hope all goes well on Monday. I wonder how they will keep her still during the MRI? As you said " GOOD LUCK". It would be hard for me to stay still for that test. I hate enclosed spaces. I sure hope she will be alright. Will they let you go in to try to keep her calm??
I am asking you to do this because I just about missed it. I'm not being bossy I just want to get more info on this kind of situation incase I have to deal with my DH going through the same thing.
Thks Jazzy - dw's apt. changed until,Tuesday. The surgeon who did her liver resection and two other intestinal procedures will be up lecturing at the med schools affiliated. hospital here He's based @ Miller School of Med ( Miami ). He volunteered to examine DW and work with radiology. He's Dir.of liver Transplant and Abdominal Surg. When her records were requested, he called and said he'd be at local hospital on Tues would we mind changing so that he could see DW and participate on the exam and possibly use her as a teaching subject. We became friends 5 yrs ago when he excised 1/l3 of DW's liver, a 12 + hr procedure, followed by 2 days ICU & 2.5 weeks in hospital. Six weeks later we took he & his his wife out to dinner. he couldn't believe how quickly she recovered. I have lunch with him a couple times a year when he's lecturing locally. One of those rare really caring individuals who happens to be a great guy. There will be 2 residents invilved with his exam he intends to show what the difficulties are I interpreting an MRI on a patient who has undergone 4 maj abdominal surgeries .
Thanks all, Reporting positive news received yesterday afternoon. Our primary, not his nurse, called Friday afternoon to inform us that all DW's blood work inc. liver function came back normal . He then asked if I could put him on speakerphone so Dw could hear him. He proceed to give DW a "pep talk" about her upcoming test assuring her of a good New Year. He's a great guy, but the personal attention and thoughts really overwhelmed us
Tests were uneventful and well tolerated intelligence we got back home. Just too much going on for DW to cope with. MD's will contact after review of scans.
Inoperable cancer through out her belly < hospice coming tomorrow No surprise given her history but still in total state of shock.... thankfully DW has virtually no comprehension
Jazzy. << 6 mos. Were she not alway so smiling and happy even when Sundowning I'd agree it's a blessing, She turned 70 on Sunday..married 53 yrs. Dated 2 yrs. before marriage tough to think of life w/o her We've been best friends forever
So very sorry, Marty. It's amazing sometimes what they can comprehend. She was telling you it's alright. You have been and are a wonderful caregiver.....and 53 years is just plain awesome.
Marty, I was so sorry to read of your very sad news. I hope you and Sue can continue to find some joy in whatever days she has left. Yes, you will dearly miss her after all the years you have spent together. Take care.
Marty I too am so saddened for you and your beautiful wife. Please accept my heartfelt thoughts, and right now, just a little prayer of comfort for both of you.
What a roller coaster. Dx and order for Hospice came from PCP Who was acting on radiologist report. Oncologist called today after he reviewed films and said " we've been aware of the masses just from palpating them. That's why I've repeatedly told DW i wanted to do a scan for the past year." She's vehemently refused to have a scan done time and again. After she declined chemo several years ago when in a much more lucid state of mind, I've respected her wishes. Our PCP talked her into a scan promising her no chemo, no surgery, he just wanted to see what was going on to make her more comfortable. Old fashioned bedside manner. Her oncologist said "I believe we're dealing with a very slow growing, g non aggressive cancer. I'm no fortune teller, but I believe a 6 mos life expectantly is very pessimistic she'll be around for quite a while. She's getting outstanding t care, and attention, just look at her she looks greatI" "I didn't give her 6 m os post op w/o chemo and that was how many yrs ago??"
Hospice intake nurse yesterday to DW. You certainly don't look Ill, I wish I had someone to "put me together making me look so good every Am. She asked end of life question to which DW was capable of nodding yes or no to respond. She maintained consistent denial of all but palliative care. Case nurse and social worker scheduled for tomorrow. DW remains blissfully happy.
Marty, I’m sorry for the latest, bad news. I’ve been mulling over my response ever since. You are in a tough spot, I know—been there too. Thought I might share a few things I learned from my experience. Though your situation is not exactly the same, maybe what I say will help. The Dementia Dx (regardless of type) carries one unforgiving fact (IMHO) and that is it carries no projected ending date for which we can watch and prepare. When my DH was Dxd with a second terminal illness that changed the picture. When refined, that Dx became CHF caused by Aortic Stenosis—Critical. Open heart surgery could have fixed it ---on a heart-lung machine plus 4-5 hours duration---not feasible for an advanced Dementia patient. The Dr. was glad I was aware of that. He told me he doubted any heart surgeon here would have touched him. I was honoring DH’s wishes—no extraordinary measures. Palliative care only. The Dr. explained how the condition would progress and how it most generally ended (99%). He estimated we’d have a year. You’ve received 2 Dr.’/s guesstimates for your wife. Take them with a grain of salt—no one knows. You are fortunate to have friends and family standing with you. That was only partly true in my case, so I had to not only stand by DH and see him through, but also limit the information some family members were given. There were few to lean on—even a little. And sometimes I really could have used a shoulder when my heart was fighting what I had to do. I made up my mind that I would do everything possible to make his days as peaceful and pleasant as I could. That was tested severely when one of his relative s, told him ”You’re going to die within the year.” I was furious. DH never knew that. I enlisted the help of the NH staff and Dr. I told them, what had happened and what I was telling him. They all followed my lead. I told him nobody knows when you are going to die, except God. When he tells you, then you’ll know. But, we aren’t going to worry about that. The next time that idea comes into your head I want you to think about the good things that will happen—seeing your Mom and sister; meeting my Dad; and don’t forget all our pets waiting at the Rainbow bridge to go with you—C hantey, Nixie, Tessie, Babe, Willow, Luna, …..You’ll have a whole army with you at the Gates. “ He laughed. That was my last gift to him that Saturday. We lost him the next night. We’d had a month. You, have the hard sadness of knowing you‘ll be losing your DW within a more finite time because of the Cancer. But you have the blessing of her outlook, and of knowing her mind about her care. You also have some time to prepare, but also, and above all, to make these days as good as possible. Keep things flexible, but do a bucket list. If her Birthday appears to be too far away, throw a ½ Birthday, party. If she’s up for lunch out—go. Nothing needs to be a grandstand deal. Work under KISS rules—“-Keep it simple, stupid”. You will get through. It won’t be easy,. Be easy on yourself. Let no one deter you from what you have determined is to be done. Take time for yourself, so you’ll have the strength to do what you must. She told you, “…only go round once and who’s had it better than us”. You will help her finish her trip in style. For now, don’t worry about what will come after. Lives are like books, and while her’s is ending, you have some chapters yet to write. If you’d like to talk, e-mail’s in my profile.
Carol thanks so much for you thoughts and guidance. In one sense I'm fortunate my grieving began in 06 when DW was diagnosed with Alzheimer's. Thankfully she progressed very slowly at a pace where adjustment to the changes just appeared to be natural. As I've posted here repeatedly she's never agitated or angry,( as the kids say Mom's terminally vague) Even Sun Downing she's happy, and smiling , it's me that become frustrated replacing everything I grieved again for DW again 4 years ago after an ER Appendectomy revealed stage iv cancer. She declined chemo in the presence of our children and her brother, at a time when she was far more lucid. Our family a close unit is in total agreement! Her mother had AD, we cared for her for two years until overwhelmed and placed her in a NH where she passed 2 yrs later. DW knew what the future of AD held and wanted no part of it. Cancer was a faster route out. She was told without chemo she had < 6mos. So much for the medical professions fortune telling skills. This is the price we all pay for the privilege of being born we all will die. Now my grief is a surreal realization of that which is undeniable her passing will be far sooner that hoped for but I still thankful for all the time we had and still have. She was momentarily aware of her impending fate with both the MD and Hospice only to respond in her true strength of character. "we only go round once, and no one's had it better that we have" with a hug. Similar words when spoken to Hospice's intake nurse while attempting to ask DW to shake her head yes or no to end of life choices... This from a woman who had not uttered a sentence in more than a year. DW has been admitted to Hospice for Cancer, not AD hence the need to go through the motions of asking. We've had a fantastic life, dating at 14 16 married at 19 & 17. Each earning two degrees nights while working parenting etc. DW enjoying a great career with IBM two wonderful daughter 4 grandchildren. We've traveled, literally round the world, dined is the top restaurants and totally enjoyed every moment together. All good things come to an end but between now and then I'll do my best to, as you suggested, make every day as good as possible. Just promised myself no writing of a macabre day by day failing by failing diary of her passing. Will focus solely of the good moments
Marty you truly have had a good life together filled with many blessings to biggest being your love for each other.
To not have to endure the end stages of AD is something I pray for my husband. I think it was Mimi that said she was happy her love did not have to endure the end stages. That is what I would like to happen to mine.
Here's the latest: Friday night DW suddenly awoke @ 1AM, sat up, arms and legs rigid and her body trembling. She had, out of nowhere, spiked a temp of 102.7 and was having a seizure.
Hospice nurses responded quickly administering Haldol, Morphine and Robinal & Tylenol sitting with her holding ice packs to her neck and forehead in the most compassionate manner. By 6:30AM she was asleep and her temp was down. The nurses departed when the Hospice MD arrived around 7AM. His Dx was severe dehydration. Her BP was very low and pulse quite elevated. Saturday night about 4AM, a replay of the same scenario. Terrifying, but I knew how to deal with it. Luckily last night she slept intermittently most of the night. She has no signs of infection, UTI, Colds etc, but who knows what's going on with the cancer in her abdomen
DW has been refusing food and drink and this was the result. The Haldol and MS have calmed her from her frantic pacing and I've been able to get her to drink fluids, Ensure, soup and her favorite ice cream. MD's comment; Be it cancer or her Alzheimer's it doesn't matter, refusal of food is the first phase in the dying process. "You do your job, get her to eat as much as possible and we'll do ours to make her as pain free as possible. We're not looking at today or tomorrow, but we're not talking weeks either.
As of this afternoon she's calm, our daughters will be arriving Wed. and Thursday, Her BP & Pulse have returned to closer to normal, The end stages are tougher on the caregiver than the patient.
Marty, yes, the end stages definitely are harder on the caregiver than the patient. Just two days before my DW's death four years ago, I had written the following in an email to family:
<<I wish I had some good news to report today, but that's not to be. She hasn't taken any food in the past three days, and probably only about 8 ounces of water in that time -- just a few small sips yesterday and none today. Nor has she really roused from "sleep" during that time. The hospice doctor visited on Tuesday and said that once they stop taking fluids, they usually die within five days, so we could be looking at this weekend. I shed lots of tears last week, almost any time I was at her bedside or tried to talk with anyone about her, but I'm doing better this week. I had told someone last week that I could probably write a country song about "those trusting eyes" that she looked at me with -- trusting me to not let anything bad happen to her, and yet bad stuff WAS happening and I was powerless to do anything about it. That hurt a lot. But this week her eyes are mostly closed, and maybe I've also more nearly come to terms with things. Making the decision to not push her to eat was hard, notwithstanding assurances from the hospice folks that she doesn't experience hunger and thirst as we do. I have realized, intellectually, that pushing her to take a few more bites or sips could only serve to extend her life for a few more hours or days, and that these hours or days weren't really good ones -- not for her and not for us. But emotionally, it was so hard not to try -- I'd feel like I'd "won" a small victory if I got her to take a bite or a sip. Earlier today I called Frances's bluegrass buddy, Bonnie, and asked if she'd try to round up a couple of other gals and do a few favorite hymns for a memorial service -- nominally about a week from today. Pretty emotional call, but we got through it.>>
And then just two days later:
<<Always one to do what she was supposed to do, Frances slipped away gracefully and peacefully in the early morning hours on Monday. I had spent the preceding three nights at her bedside, holding her hand while dozing off and on in an armchair next to the bed, as she grew weaker and her breathing more shallow and labored. She hadn't made any response to anything since the previous Monday, and hadn't taken any fluids since Tuesday. The hospice doctor had told us that once she stopped taking fluids, she probably wouldn't last more than another five days, which proved to be true -- she just finally stopped breathing at about 4:15 AM on Monday.>>
I truly hope your DW's passing will be equally as gentle.
Marty I sure hope that your experience will be as Gourdchipper describes. Gentle! Prayers going your way.
Jazzy
Gourdchipper
Your description to Marty was just so beautiful and something that we all want to hear. Gentle is what I pray for when it is time for my DH. Peaceful and gentle.
Thank you...Thank you! for sharing these most intimate thoughts and memories. Your Email to family was so apropos Just a few short hours ago while trying to cajole DW into taking another sip of Ensure I took a mental step back asked myself, what was I doing tormenting her so, just to take a sip.
Only this morning I proudly proclaimed in an email one and all and posted here that DW had an entire can of Ensure and last night a trip down memory lane a box of Good Humor bars Strawberry for me, toasted almond for her. She actually ate 1/2 voraciously, took a sip of water and then wordlessly fell back on her pillow with the first smile I've seen in days falling into the morphine/Haldol induced sleep that has been the Norm past few days
This evening I concluded I was insensitive and foolhardy to challenge nature by trying so hard to gratify my need to see her eat and drink. what arrogance I possessed thinking I was capable of altering the pace of life's natural processes. Like you I have come to came to terms with myself on this issue
thank you again it's posters like you that make this site such a unique little place in the World Wide Web
Marty, what a loving thing to give your wife...Good Humor bars! I know this phase is definitely the hardest when you have to force yourself to sit by while nature takes it's course. It is so contrary to the lives we lived while on this journey...we fought every minute of every day for our LO to keep from losing yet one more function. How then do we suddenly turn that off?
Now that you've come to terms with the issue, I hope there is peace for both of you.
Marty, I don't have to tell you that whatever you do ... or don't do ... is the correct decision. Just be guided by both your brain and your heart and what will be, will be. And try to hang in there for yourself ... we caregivers always forget about that, don't we ... while focusing all your attention on your wife.