Earlier this summer I noticed that sometimes when I spoke to Michael he would look right through me…not only as if I hadn’t said anything but if I wasn’t even there. At one point I became angry and even then he didn’t respond. Something seemed wrong.
For someone who was always moving fast, he suddenly slowed down. He would dawdle in the middle of Manhattan. He would forget his belt and his pants would start falling down out in public. He would zone out with the boys on the golf course. We had all noticed it. Was it early alzheimers? My son Michael and I had talked about it the night before Michael’s seizure. The boys were telling me to take him to a doctor. And I kept asking, “And say what? He seems forgetful?” But I had intended to speak to him about it.
After Michael’s seizure, the ER doctor asked me if I noticed anything unusual and I told him about this. He asked when I had noticed it and I said since the end of June.
It was the middle of September. He wanted to know why I hadn’t had him checked out. For zoning out? For this nebulous spaced out thing he was doing? The man has extreme ADHD and I didn’t know if this was it getting worse. I told the doctor I had considered it might be early Alzheimers. And you didn’t get him to a doctor? he said. “For walking slower? For sometimes forgetting his belt? For zoning out?” I could just see me saying to Michael, “get in the car, we’re going to the doctor, you keep forgetting your belt.” He would have laughed himself off the couch.
Michael is an independent man who rarely, if ever, went to the doctor. He used to joke that doctors were for people who took care of themselves. And what doctor is going to order a CT scan or MRI (and have it approved by insurance) for occasional zoning and forgetfulness? Getting him in the car would be one hurdle. Getting a doctor to take it seriously would have been another.
After it seemed like the doctor was accusing me of not getting the help he needed, I broke down. All my kids and my friends assured me that no one was getting Michael into the doctor if he didn’t want to go. And we all knew he wouldn’t have gone.
But when he was in the hospital, the nurses would yell at him to get up, get dressed, take this pill and take that pill, eat this, do this and that. They treated him like a 3 year old. And his response was to “go dead” like he didn’t hear them. He wouldn’t respond and he wouldn’t move. It was his rebellion. And I’ve never seen him like that. He is not passive aggressive which is what “going dead” is. It truly upset me when I saw it.
The physical therapist thought he doesn’t do it on purpose. She thinks it’s the brain tumor. Or maybe it’s a little of both. Maybe the brain tumor makes it easier for him to go dead like that.
Now he does it to me when he doesn’t want to get up. When we’re out in public I can see he needs help and he needs guidance but when he’s home he seems pretty normal to me. But then it’s time to go to bed and he doesn’t want to go. So he stays on the couch looking through me. And sometimes I yell and sometimes I pull his arm and he doesn’t like it.
He told me today that he’s sorry but he’s still upset over all the bossy nurses and doesn’t want me bossing him around. He felt embarrassed and humiliated and stripped of his dignity in the hospital and doesn’t want to feel that in his own home. He doesn’t like to be told by anyone it’s time to go to bed. He doesn’t like that I can’t trust him on the couch, that he won’t have a seizure. He likes to watch TV late into the night and always stayed on the couch when I would go to bed.
Those days are over.
And I feel frustrated that I have to make him come upstairs, and frustrated that he “goes dead” on me and frustrated that I yell.
At the end of a long day caring for him and making sure he gets fed and gets his meds and has everything that he needs, I don’t want to fight with him. We never had a power struggle like this, EVER, in our relationship. And I hate it.
I don’t want to spend his final months ever being upset with him but I can’t move him when he does that and I can’t get to bed and get my rest, which I need. I hate it.
And I hate the brain tumor.
More each day.
Rope Burns ~ A Journey 
10 comments
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October 14, 2008 at 10:17 pm
Greenroses
Susan, I am deeply sorry for what you are going through these days. I know how everything can change so drastically. My sister in law (who is like a sister to me) has melanoma since 9 years. She has had many different methastasis, a few of them in the brain. When it was a really big one (that has been removed surgically), she had been in a life-threatening situation, she almost lost her life. She arrived in the hospital that night (they had been on vacation, so the ambulance drove her all the way) and saved her life that night. We (the family) noticed that a few months before that, she had also started to become forgetful, even forgot a few words or became disoriented. We had not realized what was going on, and how severe it was.
This was 2 years ago and she has had numerous methastasis and her cancer currently seems to be in remission. I want to share with you a “kind of medication” that seems to be of help to her (and many other cancer types as well as other severe illnesses). It is called “Low dose naltrexone” and is not officially a medication as for some reason they failed to get a patent for it (or something like that), but it showes good results for a number of people. My sister in law and my brother have just been to the conference in LA, and said it was very useful. You may want to check this out.
http://www.lowdosenaltrexone.org/
Wishing you all the best, and much strength on your journey through these heartbreakingly difficult times. I echo Meredith who said you will never really be “apart” from him, after having known and loved him all those years.
October 14, 2008 at 10:33 pm
susangpyp
That’s really interesting. Most of Michael’s doctors are used to having me go around the bend with them so I’ll throw that in the next time we’re having an argument, I mean conversation. The thing I’ve read about it was that it sometimes doesn’t work for 4-6 months and I am just hoping we have that kind of time. It can’t hurt to ask but sometimes when they answer I want to throw them through a wall. So I guess what I mean is that it can’t hurt ME to ask. It might hurt them.
October 14, 2008 at 10:39 pm
Greenroses
Yes, that is true, I remember it was less effective for my sister-in-law in the first months. But now it seems to have an effect. I am not sure re. Michael’s type of cancer. On the site, they describe the various cancer types where they have found good results. As far as I know, it is also a rather “unofficial” treatment, so doctors may be resisting it (I don’t know how it is in the US). But there are ways of getting the stuff anyway, and you are right, it can’t hurt to ask, in any case!!
October 14, 2008 at 10:41 pm
susangpyp
Michael has 3 anaplastic astrocytomas (malignant brain tumors) and the survival rate, at this point, is measured in months and not years. I don’t see why they would resist something that would help or at least try if it couldn’t hurt. Brain tumors are on the list on that page.
October 14, 2008 at 10:48 pm
Greenroses
I saw “Glioblastoma” on their list, is that the same or a similar kind? Anyhow, of course you should try it! What I meant by “resisting” is that in our country, it is not an official medication, so doctors are not using it. I do not know for the US. Aynhow, we are getting LDN from the US.
October 14, 2008 at 10:53 pm
Greenroses
Sounds like it is easier in the US to find a doctor who prescribes this!!
Here is a quote from that website, among Q&A:
If LDN is so wonderful, why isn’t it FDA-approved or reported in one of the respected medical journals?
Although the Food and Drug Administration approved naltrexone at the 50mg dosage in 1984, “low dose naltrexone” ( LDN ) in the 4.5mg dosage has not yet been submitted for approval because the prospective clinical trials that are required for FDA approval need to be funded at the cost of tens of millions of dollars. In the absence of such a current scientific clinical trial, medical journals tend not to be interested in “anecdotal” reports of therapeutic successes.
Can you supply me with the names of physicians in my town who prescribe LDN?
Sorry, we have no such lists of physicians. But any physician may ethically and legally prescribe LDN as an off-label prescription. If you are very interested in starting LDN, and you are absolutely unable to find any local doctor who will prescribe it for you—even though you have shown them information from the website and made it clear to them that LDN is compatible with any other medicine (except narcotics) and that it has no toxicity and no significant side effects—then you may want to ask the many members of the LDN-Yahoo Group, who are eager to help others. You can easily join the Group (it’s free) on the home page of this website by simply entering your email address.
October 14, 2008 at 11:52 pm
susangpyp
Thank you. I’m going to find out since we need to get him a primary care to coordinate his treatments. Thanks!!!!!!!!!
October 15, 2008 at 9:49 am
Greenroses
You’re welcome! Keeping my fingers crossed!
October 16, 2008 at 8:49 am
Greenroses
Susan, have you been able to find someone to prescribe LDN?
October 26, 2008 at 5:06 pm
seeif
Susan,
Wanted to let you know that naturopaths, who are considered doctors in many states, have prescribing priveleges in these same states. I went to a naturopath years ago who prescribed thyroid and antidepressants for me. It’s legal.
Because they have a different approach from allopathic doctors, they based on their own diagnostic tools will consider prescribing conventional meds, as well as more alternative meds.
Seeif