Occassionally, in reading through the message board, I notice mentions of spouses with cancer. My husband has had alz. for approx. 5 yrs. and was diagnosed with multiple myeloma{cancer of the plasma cells} in Sept. of this year. I have always felt like I "fit in" only on this website. Now with the whole "cancer thing" added to our lives, I am feeling isolated here too. I guess I am feeling sorry for myself, but just how much is one person expected to deal with at one time?!?!? Is there anyone else here dealing with both alz. and cancer? If so, how in the #*#* are you keeping your sanity? I would LOVE to know that I am not alone, even with this latest blow to our lives. Thanks so much to everyone who takes the time to read this!!!!
countrygirl it does seem like we are given too much to bear, I'm sure many of our group haven taken the time to read your post and some one will come along to help.
Unfortunately, the answer to your question is yes, there are others dealing with both AD and cancer. One of the guys, Dking has posted quite a bit on that subject. You can do a "search" at the top of this page for the topic "My Wife (57) Recently Diagnosed W/EOAD" When you find that topic, scroll down to Dking's posts - there are two in a row that discuss his situation with his wife's cancer. But I know there are many others who have also had this double whammy thrown at them.
It is an extremely difficult road, and I am sure others will be along to share their stories and give you support.
Yes my DH has been also diagnosed with Multiple Myeloma also. He has been going to the Cancer Center but so far he as not been receiving treatment. THe center keeps a close monitor on his blood levels and they will advise if we need to start treatment. Since he is already dealing with dementia which is a terminal disease in his case the side effects of the treatments would be cruel and a waste. I try to keep my sanity by reading. I go to the library regularly and read every chance I get. YOU are not alone, I just try to deal with the dementia and not the cancer. You have to eat this elephant ONE bite at a time or it will choke the life out of you. Have you discussed to treat or not treat with is physicians??
Shellseeker50-I am so sorry about your situation! I never thought that I would hear from anyone else who is dealing with the exact same medical combination! Yes, my husband is being treated with meds. for the cancer. He also had 2 rods placed in his back, due to his back breaking from lytic lesions. Does your spouse have much bone damage yet? How is his pain level? Have they "staged" him yet? Again, I am SO SORRY!!!! This is a horrible situation that no one should have to deal with. You are in my prayers!! Contact me again if you would like to talk. I can be reached at walkergal@live.com
Countrygirl, sadly, you should continue to feel right at home here. Bebe's husband also has multiple myeloma. Iowawife's husband has prostate cancer that has spread to the bone. Jenene56's husband has prostate cancer, too. And of course Kitty's husband has dementia caused by treatment for his small cell lung cancer.
Several of us are dealing with spouses who have basal and/or squamous cell carcinomas, although of course, those are much easier to deal with than most kinds of cancers.
And I believe several of our caregivers are breast cancer survivors -- Mary, bluedaze, Evalena, and Grannywhiskers, I think. And TheQueen has been through three bouts of that. Nikki just had surgery to remove tumors, I think from her ovaries?
It seems that the more we learn about each other, the more we find members who have so many serious problems on top of the AD... I was teasing Vickie the other day that she's just like that character from L'il Abner, who goes around with his personal black cloud hanging over his head.
My prayers are doubled for those with cancer on top of AD either by the spouse or caregiver! "When it rains, it pours" was never more appropriate! It is amazing how much we can bear. Hugs for all of you!!!!!
Country girl Thanks. Yes, he has alot of bone loss. He has lost the 5 lumbar vertebrae. that area is now leaning on his left kidney some times restricting it. Thus lots of acute Kidney infections with extremely high temps. A reasearch neuro surgeon has contacted me from Shands teaching hosp. They have an experimental surgecial reconstruction program that he might be eligable for. The surgery would just replace the lost vertebrae with a plastic and hold him more up right. The surgery is long 8-14 hours. He is being evaluated now to see if he can survive the anestheia for that long. IF he is a candidate for the surgery they will keep him in the hosp as long as possible to help me out and when he comes home (in an ambulance) they will provide an RN and a full time personal care aide. It would also help to alleviate the pain. As far as his pain level, I have morphine and demerol at home that I can give him at his request. It seems that the two diseases tend to go together. You are not alone here.
All things considered, things are going well for us. My DW (51yo) has completed the 5th session of chemo with one more to go. She has no pain and no naseua from the chemo. I have medications for both, but they have no been necessary. She eats well and has become pretty strong. In mid-September, before the Small Cell Lung Cancer diagnosis, she could barely walk, looked bad and was in some serious pain in her bones. The cancer has metatisised to her bones. The diagnosis was tough because she couldn't tell them about the pain and all the early tests (chest xray, MRI, CT scanss, etc) didn't show anything. There was also an underlying, but unspoken, "maybe she's just trying for sympathy" or "the pain's just in her head, she has dementia after all". The diagnotic process was akin to medieval torture (from her pespective). After every test in the book, the second bone biopsy provided the diagnosis. The oconolgist was clear that it could not be cured, but would probably reverse the dementia and provide pain relieve. He was also clear that "pain was real". The dementia did not reverse. The only reversal was that she became continent again, if I am proactive about reminding her and show her where the bathroom is (every time). Her short term memory is literally 45 seconds. That makes going to the basement to put on a load of laundry a more athletic event than I would like, because if I'm not running (being careful not to break any of my parts as I scramble down the steps), she is panic'ed by the time I reappear because she couldn't find me. As bad as 2008 has been, 2009 will likely be worse. I expect to run out of money before we run out of cancer treatment, and no matter what we do, sometime in the next few months, this will not end well. Yesterday was a very good day and today is going pretty well. As a planner and troubleshooter type of person, I am learning to adapter to no more than a 12 hour look ahead. It eases my pain. I posted our picture from yesterday in my profile. Thanks to all, especially Joan, for the support, the education and the just being there.
dking, I realize the financial situation but if there was someway you could have your Washer/dryer moved upstairs it would be best for both of you. Having to hurry up and down stairs is dangerous and all you need now is to trip and fall and break a hip. I have a stack W/D in an apartment closet and it works great. I have a friend in a wheelchair who got a stack unit and put it in her kitchen. Is there any financial resources you would be elgible for now?
I know there are a number of assistance things available. Actually I think she would be elgible for Hospice with the cancer and you should look into it. Even though she can still help herself some I think she would still be elgible and they would send you an aide to give her a shower as often as you want. This is a big help and they also do her hair, teeth, etc. and it won't cost you a penny, also they will provide some of her medications. I would give them a call.
dKing and anyone else dealing with this multiple diagnosis or at stage 6 call hospice. I can't emphasize that enough. You will get lots of things paid for thru medicare if y0u are in hospice care. Also many great services. EVERYthing they mentioned here, plus possible volunteers so you can get out to shop, go to dr yourself, get a haircut, whatever. Social workers come with the package and can assist in finding assistance. There is also a chaplain. Since Glenn's death on the 20th of this month I have had them all check in and next week they will all check on me again. I made it thru Christmas OK and I will write a longer note to all of you next week when I am hopefully a little more grounded. My e-mail is in my profile. I am trying to arrange a trip to Squim (sp) outside of Seattle for right after new years to stay with my best friend and let her baby me for a week., I am still very exhausted. Hope Frand and some of the others who have recently lost their spouses managed to get thru the past few days OK. Have to get into docs next week, I am going to have to have breast biopsy again. Got bad vibes about this. I will let them do mastectomy this time. You all have been my salvation over the last few months., Take special care of yourselves and I will post again,. patricia
Patricia, we'll be waiting to hear, and keeping all fingers and toes crossed. I hope you have a wonderful, very restful and thoroughly pampered visit with your friend.
My DH has had prostate cancer dx in1988 he had Iodine-125 radiation therapy and he has had bone Mets and AD since 2005. He is now on Zometa infusion for his bone cancer once a month, Zoladex injection for his prostate cancer every three months and Casodex since his PSA is starting to go up. His PSA was 15.9 in March this year and 125 this month. If his psa goes up again they will take him off the casodex and there is nothing more they can do that he wants that is, he could has chemotherapy but he does not want to even back in 1988 he would not have chemotherapy. He is getting weaker every day and his legs do not work right anymore, I have to do a lot of lifting now trying to get him up, not sure how much longer I can since I have osteoporosis. I will probably be getting hospice within the next couple weeks, we have a doctor apt next Friday and that is on my list of things to talk about. I am not sure if now is the time to take my family leave since I am still working, he still goes to day care two days a week but it is getting too much for him all day all he want to do when he gets home is sleep.
All I keep telling myself is to enjoy what time we have together but its really hard with the AD and the fact he does not know who I am a lot of the time but sometimes he does. I just live one day at a time and sometimes 1 hour at a time. We have been really blessed we have had a lot of good times since his diagnosis.
Love this saying especially since we first got together in Al-NON: God grant me the SERENITY to accept the things I cannot change…courage to change the things I can… and the wisdom to know the difference.
Iowawife, that saying is special to me also. It's not just for those addicted to alcohol. It's equally applicable to those of us dealing with AD. My heart really goes out to you who are dealing with cancer in addition to AD and those whose LO's are in the latter stages.
For Christmas my husband actually picked out a cross with the Serenity prayer on it that he wanted to give to me when he was at the mall. It is special