When I started this blog a year and a half ago, I had no idea what would happen. Would people read my words? Would anyone care about what was happening to our family and in turn so many other families just like ours? Would I be able to make a difference? How much of our personal life would I be open and honest about without exposing too much? Would this harm our kids? Would I lose friends? Would I be found out as someone who still can’t remember correctly where to put that apostrophe? Would I embarrass the kids or Jim? So many “what ifs” floated by and of course there really wasn’t a clairvoyant who could tell me what would happen.
It didn’t take long before I became aware that there was a huge number of people who were struggling with Alzheimer’s Disease and everything that goes along with caring for someone with AD. These souls needed to feel connected and somehow a little less alone. I am so very proud of the fact I have been able to fulfill this need for so many around the world. Yes, around the world. So, I sit in front of my computer, day after day, week after week. I pour over heartbreaking stories and feel less alone. I see the angst and suffering that so many of my comrades feel day after day. Desperation. Loneliness. Heartbreak. Determination. Grit. I love, Love, LOVE the correspondence that shows up in my inbox daily. I am so appreciative that anyone who feels the weight of the world on their shoulders would take the time to read my words and then take even more time to write to me….well, I am just honored. I write from my heart; as I would speak to a friend. A confidante. Someone I want desperately to understand my side of things and simultaneously learn what it is like to be afflicted with this shitty disease that takes away each and every aspect of your humanity. I do this to educate and to support. I do this because it heals me.
I recently received another letter asking for my advice. This is a compliment to me but let us not be fooled: I am experienced in dealing with the early phases of Alzheimer’s Disease, but I am by no means an expert. I can barely pronounce many of the medical terminology associated with dementia. I seldom can repeat verbatim what I have just read or heard when it involves scientific jargon. I get the gist. I comprehend. I get overloaded when I read too much research and information online. Just because I live with someone who has this disease does not mean I am qualified to tell anyone else what to do. One thing I have learned over and over; Alzheimer’s affects each patient uniquely. Drugs work differently. Outlying effects happen. Strategies and opinions abound.
Hi Karen! I remember reading that Jim no longer takes aricept (not sure about namenda) and I was wondering what his Dr. may have said about that. Did you ever see any benefit of it for Jim in the beginning and how long was he on it? Dwight has been taking aricept for over 4 yrs and namenda for over three years and he seemed to stay about the same for maybe a year after starting the aricept……then the decline seemed to escalate. As you know it’s very expensive. I wouldn’t be as concerned about the cost If it did any good at all, but when he started the aricept the Dr. said it would only slow down the progression for about a year……….if that’s the case, why are they still prescribing it to him? I asked a pharmacist about it recently and they couldn’t say one way or another……and that probably wasn’t the person to ask. After all they are making money off of it, right!? Dwight’s next appt at Sanders Brown Research Center is in August and I’ll bring it up to them………but I’d love your input. Dwight has never been one to take any medicine…….just toughed it out , so I hate the fact that I’m giving him all this stuff and he’s getting no benefits from it that I can see. What if they tell me he’ll go downhill faster if I quit……..could that be the case? I’m just afraid of doing the wrong thing.
I share this letter because I know, yes, I know so many others could have written it. MANY could have. MANY have. So many of us who are trying to figure out what to do are desperately searching for answers. I have very recently realized that even though I said a vow to honor Jim and to stay with him in sickness and in health, I now understand I am responsible for him. If he gets lost. Me. If he doesn’t eat. Me. If his shirt is on inside out. Me. If he loses his glasses again or doesn’t clean his toenails or take a shower. Me. Me. Me. Yes, we all agree and understand our vows on our wedding day, but we have on rose colored glasses and we never think that our loved one will no longer be able to understand finances or will become unable to discipline the kids or carry on a conversation with neighbors.
So, I understand the desperation in each and every message I receive. Thank you for thinking so highly of me, but I am afraid I can not help you. I can only share our own personal experience. What I do encourage everyone to do: ask your doctor. If your doctor does not give you satisfactory answers, find another doctor. Find a support group. Ask every member of that group about their doctors and about what medication/treatments they have tried. Look online…there are some wonderful Facebook groups to seek out answers. Ask, ask, ask. Then be quiet and listen. Listen to what they have to say and then determine how it will help you with your dilemmas.
Our first neurologist was not anyone that I would recommend. So I asked around and found a new one. I feel as if I am Jims’ advocate. It is my responsibility to make sure he is heard and paid attention to. When he lost a lot of weight after being on Aricept, I spoke with the doctor and took him off (after many other tests came up negative). When Namenda and Exelon showed no improvements, I spoke with his doctor and took him off. Either way, do your own research. If you read about any drug used to combat the symptoms of Alzheimer’s Disease, you should find that these pharmaceuticals do not promise or intend to cure. They will help stave off symptoms for about a year at best. The patient will eventually end up in the exact same place they would have been without the prescription. So, the question remains….how can you determine if the drug is helping? Would they be declining more or less without the drug? There is no way to tell because this disease does not affect everyone the same. Time frames and symptoms vary as do the lengths in between changes. Not every patient has side effects. I have sat in support groups and at symposiums and listened as caregivers tell about positive changes seen when drugs were started. And I have witnessed firsthand this not being the case. There is no way to know. You must do the best you can and know that your decisions are coming from a good, honest place.
Unlike most illnesses, there isn’t a “normal” course of action. Caregivers have a lot of leeway and a lot of input. Unlike a family who faces a battle with cancer or a heart attack, you do not visit an expert, choose a course of action, start fighting the battle, return for treatments and tests on regular intervals and have the possibility of a win. When you receive the horrible news that Alzheimer’s Disease has made itself at home in your brain, you have no options. No surgeries. No treatments that will lead to a cure. You have a doctor’s appointment in 6 months.