Normally only a lurker....someday, I'll share my DH story but I wanted to relay my experience to Frand
With all the other things they are checking on your DH, don't forget pain.
I few years ago, my father experienced a shutdown like you describe in your husband that happened very rapidly. He was only in his mid-60's, already hospitalized as they were trying to track down why they couldn't get rid of his pneumonia. He had also been complaining about back/hip pain for a week. It turned out to be lung cancer which had already spread to his liver, bones and brain and was terminal.
We involved Hospice and overnight he had shutdown to where he would only sleep, not urinating and could only be roused a little bit to speak to you. He looked comfortable when resting but along with hospice we decided to give him strong pain medications since we knew his cancer was in his bones and that is supposedly some of the worst kind of pain. We knew he had complained of pain prior to the discovery of the cancer. Within 12 hours, after starting the morphine, he was sitting up in bed, laughing and joking and eating pizza. With the hospice care, he had two good weeks of comfort and normal interaction prior to his final downhill slide of another two weeks.
The body has natural ways of compensating and protecting itself, shutting down due to severe pain is one of those. I have read on this site that AD patients often don't have the classic pain responses. Although you still need to find the underlying cause, it is possible that your DH is responding to pain and really needs some pain meds.
Catherine, you don't have to share your DH's situation until you are ready, and maybe not at all unless you really want to. It is the sharing of information that is the most important thing. You have done that already. Welcome to the community.
Catherine - Thank you so much. I have been thinking things through since yesterday and am prepared to ask for a Hospice evaluation when we go to get the CAT scan. In my mind I already think this is cancer. Since no one in his family seems to have cancer of any kind until now I have been thinking he was tired as a symptom of PD. It is such a shock, but I think this is the direction we are going now.
I really wasn't even meaning to imply that your DH had cancer. I really was just trying to show that pain alone can cause some of the shutting down you are seeing. If it is pain, my hope for you that it is something that can be fixed (infection/injury), instead of cancer. I hope, for both of you, you get some answers soon.
Also thanks Starling, I just haven't told my story because it is a work in process (we are mid-diagnosis) and I haven't even been able to get my arms around it to begin asking the questions I know this group will be able to help with.
I'm 47, DH (can I call him LH, lunatic husband!?) 49, 3 kids, 2 in college. 2 years of symptoms (frontal lobe stuff, planning, reasoning, a few minor memory issues, personality changes, anger, etc) and a disintegrating marriage which made no sense after 25 years. I never could get him to the dr (nothing is wrong with him according to him) did but his sister did after one phone call in May. MRI revealed multiple lesions/spots all in...the white matter of the frontal lobes. All testing done now except for 5 hr neuropsych, will be mid August before that is done. Don't expect to get a classic AD diagnosis, I think we will be some where in the VaD or FTD or something even more vague like non-specific neurodegenerative disease.
Will post again when I know more and my questions overwhelm me!!!
We are back. I contacted the doctor and Hospice. Actually, Hospice said they could come out for an evaluation this afternoon - IF they get some preliminary response regarding the CAT scan. Everything seemed to be in motion when we left the facility, so now it is just the waiting game. Catherine - don't worry - I know you just mentioned the pain. I just think we are to the place where things just can't be fixed, but I will know more later. You definitely have a full plate - all of us do, just served up differently...
Hi, everyone. Here's the scoop - it's the gall bladder. Of course I can't just let that rupture, so we are trying to schedule surgery. The thought was to do it in Bozeman, but no appointments for two weeks. Right now I am getting the information FAXed back to our primary care provider in Astoria, OR in hopes they can get something sooner than that. I already talked to the folks at the Alzhiemer's and Aging Institute in Portland and was told OHSU would be LONGER than two weeks - so I am in limbo for a while. Thankfully his pain isn't constant and he sleeps so much I think we will be ok this way. If not, we can always go to the ER - even here they would find a surgeon somewhere in Montana ASAP, but the preference will be to get back to our roots. Apparently this can be done with a local anethesia and laproscopily (spelled something like that). Thank you for being so concerned when all of you have plenty to worry about. I'll be in contact as I can. Love to all of you...
Frand, that is terrfic news. The laprocopy is so he can wear a bikini again and the healing with that type of surgery is a lot faster than the traditional kind of surgery.
We are heading back to Astoria tomorrow. We have 850 miles and 4 days before our arrival, sothat should work. We are seeing a surgeon 7/24, with surgery scheduled for 7/28. As much as I love roaming, it feels good to be going back 'home'. At this stage, I got out pictures of where we lived and it only 'rings a bell' for DH, but it definitely feels like return to me.
frand-be safe on your trip. Glad you could work out a surgery schedule on the road like that. Whoa I have problems getting it all together and I am not roaming the world. Enjoy home and good luck with the surgery.
Have a safe trip frand, and hope to hear from you soon. It is amazing that you got all that scheduled while on the road. Going home will feel good at this point.
Frand, my husband had his gall bladder out, by laporoscopy. It is far less painful and does heal much faster with laporoscopic surgery.
I know this has been horribly stressful for you, but now you know what the problem is, so it won't be as scary. And people can easily get along without a gall bladder.
Frand, Have a safe trip back to Oregon...we still live in the land of plenty..green and lovely. Your weather for travel should be great...no rain and not too much hot stuff.
thanks, everyone. We are one our way, at a rest stop just east of Missoula. Everything is going along great - easy travel. Hank is willing to get on the bed and rest. I'm certainly glad it is gallbladder trouble - because the surgery can be done without a general anesthesia and as you said, Sunshyne - the gallbladder isn't that necessary.
Yes, failure to thrive is a favorite, but a real diagnosis, especially in those with dementia. However, in preparation for demise, the body senses that it does not need food; it is preparing for death. Thus, appetite decline may begin anywhere from 120 to 90 days. Fluid intake will remain stable for some weeks after, but "pushing fluids" may compromise other body systems, i.e. cardiac.
I am not implying that your loved one may be in the dying process, however, it may be something to consider. I just wanted to clear up and perhaps possibly have explanation for some of your concerns.
God bless you and give you comfort during this time.
Hi, everyone - I can hardly believe I drove our motorhome 850 miles in two days, but I was very motivated. My DH was so confused about everything - I really don't think he understands he probably has to get his gallbladder removed and that we needed to get back to Astoria (though not quite that fast). The real corker was today when we were driving along the Columbia River on the Washington side. If any of you have done that you remember it is two lanes, but not much traffic today (guess why - I paid $5.05 for diesel in WA). Whatever, Hank was actually getting mad at me for driving to Canada, heading southeast (not sure how that gets us to Canada) and wanted me to turn around - LOL. Finally I called his daughter and let her talk to him on the phone after explaining what was happening. When we finally got to a bridge that crossed in to Oregon I told him we were crossing the Columbia and were now in Oregon - which means home to him. Thankfully, that worked and finally I got him to go back a take a nap. I was pretty sure he would remember the RV Park here, which thankfully, he does.
Fran, that was quite a bit of driving all by yourself in an RV! Congratulations! Of course, you had motivation! <grin> Here is hoping that your DH's surgery is soon and his road to recovery from that pain quick as well. I know you are both happy to be back in Oregon!