Jeff, my 64 year old husband, is a little hard to stage, because he's PCA rather than classic AD. But let's call him 4-5 for memory, 6 for ADLs such as dressing, using doors, etc. So, I'm a full-time caregiver. My dad died in '09 of Parkinson's (age 77,) with some creep into related dementia. My paternal grandmother died in her 80s while declining into AD. You might say that (like most here) I'm pretty sensitized to how neurodegeneration can just come and get you, and there's not dang much you can do about it if it does.
I will turn 50 this year. I go to the dermatologist once a year. In August, she decided to send a fairly unremarkable spot off for biopsy. It turned out to be on its way to melanoma. Not quite there yet (still "benign" according to insurance claim rules,) and "in situ," which means not in a cell phase where it would be spreading. So now I've got a rather impressive surgical excision scar on my right bicep.
But, based on everything I've learned about this, the cure rate at this stage is pretty much 100%. Still, I'm freaked that it happened, and equally freaked that it may happen again. Protocol dictates that (for a while at least) I'll be visiting the dermatologist every 3 months. So, diligence will be the key. And with diligence, presumably, I can stay healthy.
Until very recently, though, I wondered what I would do if I ever start to show the initial signs of AD or Parkinson's? I surely do not want to have to descend through it under the care of my children, the way their dad is descending through it under my care. I know some of us here have stated they would end it. One of my heros and favorite authors, Terry Pratchett, (who has Posterior Cortical Atrophy, like Jeff,) has made a documentary in which he contemplates assisted suicide.
Not sure I could or would. But I would and could, at such a point, deliberately neglect my skin. Because, frankly, if it came to a choice, I would rather die fairly quickly of metastatic cancer with hospice, morphine, and relative brain function in attendance, then do the Alzheimer's or Parkinson's gig. Thanks. Your mileage may vary.
Of course I may be just blowing smoke, since my skin scare could have been a one-off event. I hope so actually. But I'll remain diligent. Because, for now, I realize I want to see how much life I can get away with, even though the parameters aren't the ones I picked. I still want to write books and blogs, travel when I can, hang out with my kids. The painful twinge from my right bicep every time I stretch my arm a little too much is reminding me of this. Maybe that was its purpose.
Em-I understand where you're coming from. I've been through the cancer bit and now worry about my girls. If it came back again I'm not sure what I would do. Like you I would rather die of a nice clean disease with lots of morphine than decend into hell with lack of brain function. My girls still need me and I live for them. Lots of good stuff yet to come-I hope.
Sadly, I think the biggest difference would be if we had cancer, friends and family would still come to see us. I can fully understand what you are saying.
I agree blue,with cancer-seems like people are better at understanding and wanting to help.Guess they assume with this darn disease-out of sight out of mind-!
Strange how each of us are different in our thinking of what is the best way to die. I would rather die of AZ then cancer. I think it is a blessing to not know anything, care about anything, and not know it is your children, grand children standing at the foot of your bed weeping, especially if you don't have pain and just slowly die versus still aware of what is happening to you and how it is affecting your family.
When I see the turmoil that goes on in Gord's head, I too think cancer is way better. He seems to almost always have some terrible inner battle raging on.
Undecided about whether I would prefer AD to perhaps cancer. Having watched my father die of AD and now my husband is following, I tend to agree with Judith, that it isn't a particularly bad way to go...for the patient.
FD has had lymphoma since 1983. He's had relapses and with treatments he had remissions and at last week's checkup his B W is all in bounds so this is almost a remission. Except for weight loss he is in good physical condition. But with Vascular Dementia what future does he have? About whether I'd prefer cancer or this?? When he had active cancer we still had a good relationship going but now he just isn't here anymore. Looks like the choice wasn't left to me. Bluedaze* - I'm with you on that one.
Bob, if that new treatment they have found in Israel works like they say, I would definitely have my husband undergo it. He is still in the earlier stages and if it took him back 1 or 2 years ago, then he could still do the work in RV parks. He could still repair things correctly and we could still travel without conditions. If a drug came to stop it where it was, I don't know - maybe. If he were further along, not really able to function - then no.
It would be. A moral dilemma. Jeff was looking at a book today, which (for some reason) I left with his book collection. Alzheimer's for Dummies. We got it back when he could still actually process things better. I guess he looked at a few pages, then found me and said (with all the difficulty he has actually articulating anything,) that he didn't see how the problems mentioned in the book pertained to him. That's what he meant to say, even as it came out in very halting partial sentences.
I said, "well, yes...because your type is a little different."
He wondered if he should be "worried" about what it says in the book.
"No," I said. "Why worry about this stuff?"
I should probably disappear that book. But what IF he got wind of a drug that halted the progress and articulated that he wanted it? He has no idea of his limitations. He thinks he can do everything he ever was able to do, even though it never occurs to him to attempt anything, and all he does is sit in a chair all day, requiring sitters if I can't be there.
Is it ethical for me to say "that wouldn't help you," because in my judgment his quality of life is not sufficient? Or should I say "fine," and assume that as he is a rather physically healthy 64 year old, we will just have sitters for the next 20 years? I am sure that some here could easily choose the second option.
I would not choose that option for Gord. I could not live this way for another 20 years. If it were me and a moment of grace allowed me to see how my life was, I would not choose it for me.
I'm planning on starting to smoke cigarettes once I turn 70. Heart disease runs in my family and I'd rather die in my 70's then be a ninety year old widow alone in a nursing home.
If something were available to halt my husband's progression today, I would do it since he's still capable being left alone and taking care of the house. On the other hand his younger brother (who also had AD) is in the end stages. He recently had a seizure and was put in the hospital. While in the hospital he got pneumonia and was treated for it. If my husband were that far along I'm not sure if would want to prolong the inevitable.
I doubt that I would give it to my dh-he can do little for himself now-can never be left alone.Can not even go to the bathroom by himself.I think if he were in his right mind set he would say don't let me live this way.I know if the roles were reversed I would not want it given to me. I agree with Bluedaze-
What I took away from that article on the Israeli research is that the most it could do is buy another year or two - not take them back to where they were a year or two ago and stay there and never progress any further. Did I miss something?
One more thing - when I read "a cure" for AD or other dementias, then I will definitely perk up and be interested. Until that happens, I'm basically not interested. I'm not sure what that makes me.
It seems worth adding on to this old thread, even though I want to take a different perspective. I had a mole removed 10 days ago and heard on Monday that it was a melanoma. I haven't seen the pathology report yet, but my impression from what the dermatologist said on the phone is that it was not yet to the very dangerous stage but a little past in situ (depth was .83 mm). The only thing that looked suspicious about it was that it was black--it didn't have any of the other danger signs.
I do have a will that is designed for what if I die before my husband--I described it as the "if I get hit by a bus" will. But this melanoma scares me. I would rather die of something else before I get Alzheimers (strong in my family but starting after 80--I am 57). But not in the next few years. My kids (ages 19 and 22) still need my help, and my husband is in the worst stage of thinking he can still do things (the dementia part of his illness is progressing very slowly).
So I want to remind everyone of the importance of taking care of yourself. I worried about this mole for a year before I went to a dermatologist (I did ask when I had a physical exam and the nurse practitioner said it didn't look worrisome to her but if I was worried I should go to the dermatologist). Don't put off the care you need to take of your own health--so many things are so much easier to deal with if caught early.
So sorry that you have had this worry, but it's good that you got in to see the dermatologist when you did. Sending you love and very best wishes and prayers.
When hb had it on his arm, they kept taking it deeper and wider until there were no more little 'feelers' as the doctor put it. It was just above his elbow and had quite a hole but over the years it has filled in for the most part. That has been probably 10 years ago. Yours was caught early - they may have to 'dig deep' but should get it all.
I'd never read this thread before, now it's made me think about this again: I had two sisters, one died at 90 sharp as a tack. The other is 91 with vascular dementia, not AD. She is at home with 24/7 help. She can barely walk, has a sitter/walker of some type. She's a 50 yr breast cancer survivor, but otherwise in good physical shape and given the ultimate good care. Everything she eats is prepared fresh, monitored and written down. Her caregiver team is excellent, but VaD is not AD. They are caring and careful, her son and DIL never had children and have been the designated caregivers for several elderly in her family and now have lots of experience for her care. I am grateful. As her younger sister I'd feel the need to step in, but I am too sensitive to caregiving for DH for 10 yrs to do it again at this age. Raised during the Depression, her husband had nothing and worked hard for what they did have. Now it is going out faster than sand thru a sieve. I visit her and sometimes I'm not sure she really knows who I am. Her speech is gibberish, but I've known her all my life so I usually understand what she means. She was the family smart one but started complaining about her memory a good 15 years ago--now it's full blown.
At this point, 83, I think and pray that I'll be sharp as the other sister, but I think, what if I'm not, if I go like her. I don't want my children to care for me when there is no chance that I'll be cognitive. I'm not sure I'd want to even be here like she is, altho she enjoys all the fussing over her and seems very happy and satisfied with her life now. She sometimes refers to her son as 'that man who comes around.' I think, yes, she's my sister, I remember all the good & bad times, if it were otherwise, we'd still be going out to lunch, talking, laughing, having family get-togethers, she doesn't come to any now. I can't ask her, 'Would you rather not be here in this way?' I don't know how she feels about that.
My sister is not my husband, the emotions, the loss are not the same, but as I said, I am ultra-sensitive to dementia. As some of you stated, it does invade our lives more than we'd like to admit, it takes over completely, everything else goes by the wayside--including our own care, which I didn't always put first either. So I look at my sister, my children would see that I'd be cared for, but I don't think I'd want that if I couldn't participate in their lives, just waiting for a visit or phone call to talk gibberish. How much does she really understand or care about anymore?
For some time the same thing has been happening to an elderly SIL I've been close to. Her children are taking over. We all live 10 minutes from each other. Dare I say, 'What's the point?'
Pam, I’m so sorry you have this added worry. I hope they got it early and the removal was the only treatment necessary.
I had a skin lump removed yesterday, and am anxiously waiting results. I would add to your general warning about taking care of yourself – one should always trust one’s own instincts, and ALWAYS opt for a biopsy, and do it NOW - not later.
My spot was not a mole – just a pink lump on my forearm, that would not go away and was rapidly growing, and would not improve on its own, nor with Clearasil or antibiotic ointment. I’d had it 4 weeks.
My dermatologist, who is very highly rated, initially said it was probably just a benign keratosis. He gave me 3 choices – A) watch it and see if it gets better on its own – sometimes they take 8 weeks to clear up, or B) he could freeze it so I wouldn’t have to look at it anymore, or C) he could biopsy it so I would not have to worry about it. I choose C, thankfully (I had many sunburns as a child – one severe, so I am paranoid).
After the biopsy it he said it did look like a skin cancer. Hopefully it was basal cell and over and done with. I’ll get lab results next week.
No matter what the results, it really has me thinking about what would happen with DH if I were to get hit by a bus tomorrow (DH was diagnosed with MCI, and has declined to where I am sure he has early dementia – but he refuses to go get a PET scan because he “doesn’t want to know.”)
I guess I need to have a talk with my children and outline what they’d need to do to monitor their father, protect finances, etc.
Forest Gump was right – “Life is like a box of chocolates, you never know what you're gonna get.”
Mary22033: My "what if I get hit by a bus" will leaves half my assets direct to my kids, half to my husband in a special trust (with a local accountant as trustee) that would not get in the way of his getting Medicaid. I did it that way because the rules of Medicaid are so restrictive that the only way to have money available to improve his quality of life is to give it to someone else. The problem at this stage is that DH would be convinced he could live alone.
Have you changed your power of attorney to one of your kids instead of your husband?
The POA note is important. I did switch my power of attorney from my husband to a daughter within a year or so of his Dx. I never told him I was doing it though.
After my DH was diagnosed we BOTH changed the POA's , executor of the estate , and healthcare stuff to our oldest daughter. That way if I "get hit by a bus " she is in a position to take care of things.
I haven’t changed my POA or medical directive, but I guess I better. I keep hoping something will magically happen to get my husband to agree to the PET scan and, after an AD diagnosis, we would go together and make changes to the legal documents. I hate the thought of doing it without him. If I go in to our lawyer and explain the situation, since he also represents my husband, wouldn’t he be ethically bound to inform my husband?
Even if he gets diagnosed, he is likely to drag his feet on doing anything that results from the diagnosis, if he doesn't deny it entirely. The only reason my husband was willing to speak of what he couldn't do any more was that he had to in order to get disability retirement, and he was glad to get out of the stress of working.
I rewrote my will with a Medicaid specialist, not with our joint lawyer. I set up a trust that my husband is going to hate if I get hit by a bus. I consulted with and sent a copy to our joint lawyer, because I made her my personal representative (executor). She said nothing about informing my husband. I think if the lawyer believes you are acting in your husband's best interest, the lawyer is likely to be content to not rock the boat. They probably have experience with the problems of dealing with someone in early stages.