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    • CommentAuthorJan K
    • CommentTimeFeb 8th 2013
     
    Last month when DH saw a couple of specialists for various things, his blood pressure was quite high. It had been normal for a long time with one pill of one medicine, and half a pill of another. When I saw that his blood pressure was elevated, I started giving him a whole pill of both meds. This month when he saw his family doctor, his blood pressure was fine again.

    I had talked to DH's family doctor about pain DH was having in his back and hip, and the doctor didn't seem concerned about it. I then made an appointment with a pain specialist, who ordered an MRI and discovered that DH has serious back problems.

    Tuesday night DH started having vertigo whenever he moved. I recognized it as the same thing I had some time back, gave him some of my antivert, and called his doctor right away. His doctor wanted to send him to a neurologist, which would take weeks. I insisted very strongly that it wasn't a neurological problem, but that he needed to get to physical therapy, where they could help in just a visit or two. We saw the doctor, he wrote the order for physical therapy, PT had a cancellation and DH went to therapy today, and is already feeling much better.

    On the way home from physical therapy, I realized that some days I feel like I'm practicing medicine without a license. (And from what I read here, a lot of other people have to do that, too, tweaking meds and pursuing help independent of a family doctor.) I mean, if we had to see a doctor every time anything came up, we wouldn't get much accomplished some weeks except going to the doctor. And who has the money for that, anyway? But it's scary that so much falls to me, when I have absolutely no medical training. The only training I have is observing DH closely for over four decades, and all the reading and research I've done on all his different medical conditions.

    I worry that I will make the wrong decision some time, and then I realize that DH's doctors have made wrong decisions, too. But it's really scary to have this responsibility for somebody I love. I don't want to look back and have to live with mistakes. With most of the major end of life things, we have talked over what he wants. But we're not even there yet, and I'm already having to make a lot of medical decisions—and not all of these have been talked over.

    I hate this disease.
  1.  
    JanK--I often felt the same way when caring for my DH. Especia;lly during the time when his Neuro_psychDr. ignored and isnmissed me and my obsrvations/inpiut. He'dd take DH's. Later, when we had Hospice aboard for a while, it was a reliefthe kow the extra Ativan I'd used a few times were really okay. At that time his Rx was for .5mg twice a day, with maybe one more half at night if needed. Hospice put him on 1mg. up to 10 times a day as needed. From then until his last hospitalization he was on 5 a day, with 2 extra the 10 days over the Full moon.

    Now I'm goin g throug similar glixtches with my own care. OT's who don't know anything abou my con dition, didn'teven go look it up, but attempt to provide guidance . A PT evaluator who didn't know anything about it, assigned a PT to set up a home therapy plan to build my leg muscle sxtrengxth. She knew a bou.t it, and said frankly, "You and I? both know there's no plan that will do that." We shook our hewads over that assignment.

    I had to advocate for Dh, push, for changes in his care, change Drs. At Dx n 2006, I said the best place for him was at home, if I could have some help. In 2010, I asked a cou.Ple quesmtions about Placment, and our Case Manager said, "But yousaid the bebst place for him is at home." Talk about being shot down... In 200k6 he was just stating Stage 5. i2010 he was in eazly Strage 6an d prone to eloping. There were other behaviors as well. You all know what I mean.
    All we can do is inform ourselves; know our spouses; and do the best we can.
    • CommentAuthorAdmin
    • CommentTimeFeb 9th 2013
     
    JanK,

    Thank you for starting this discussion. I did not become a doctor for a good reason - I am horrible at math and science, and I can't stand the sight of blood. I do not like the role into which I have been pushed. Dr. Diabetes says one thing; Dr. Alzheimer's says another thing; Dr. Orthopedic says another; Dr. Urologist says another; Dr. Pain Management says something else; Dr. Primary says nothing. It's left to Dr. Spouse to make the decisions on which medications to adjust and eliminate. It's up to Dr. Spouse to organize, dispense, manage, and monitor medications and his reactions to them. And while Drs. Diabetes, Alzheimer's, Urologist, Pain Management, and Primary drive fancy cars and belong to country clubs, Dr. Spouse gets paid zero. Dr. Spouse is not a happy camper.

    joang
    • CommentAuthordivvi*
    • CommentTimeFeb 9th 2013
     
    it is so very true, jank. but for me i think my DH has lived alot longer than the norm with AD due to my dallying also without a license. only we know them better as we live with it 24/7. like someone says they see them 2/year and make a call on how to treat. its up to us to witness evaluate and decide which meds help which dont which cause harm which dont and which are useless. AD is a very tricky patient, and likes to change the rules for each individual. some of us use the same meds, some of us use no meds, but i bet none of us use all the meds. i thought it funny my hospice dr takes my word that DH has another UTI now and just sends out the meds. its been the same type of bacteria for 3yrs so we are all on board how to treat. so in a way i guess yes i am the dr on board at this point. they ask me what i need to make life easier and its working for me.
  2.  
    and divvi, isn't it wonderful; that they listen to you?
  3.  
    When I was giving the Hospice Doctor his 'health history' and a run down of his meds, the M.D. interrupted and asked me if I was an RN! NO, I replied, "why do you ask"? He said, "You certainly sound like a medical professional". So, there you go!!!!

    Nancy B*
  4.  
    I've been told that also....lol
  5.  
    Yes, we learn a lot about medicine with our own bodies, raising children and then as caregivers. Sometimes a med would make my husband climb the wall and I was advised to wean him off of it slowly! Yeah, right. I'd stop it cold turkey and nothing bad ever came of it. We have to live with it and their reactions. Then there are the docs who tell me what is best to eat or not eat. One says leafy green vegs, another says no leafy greens, one says dairy the other says no cheese, oh, well.
    • CommentAuthordivvi*
    • CommentTimeFeb 10th 2013
     
    carol, it makes life alot easier at this juncture for sure. i think the community of drs is finally realizing they know only what they are told in the books, and they arent hands on like we are.
    • CommentAuthorring
    • CommentTimeFeb 10th 2013
     
    I am fairly new along this
    adventure but have already noticed that the doctor's tend to ignore my input and/or observations. Its quite frustrating but I notice a huge change in my attitude and unwillingness to accept that these doctors automatically know what's best for my husband. I ask a lot more questions and am no longer afraid to challenge instead of accepting.
    • CommentAuthoracvann
    • CommentTimeFeb 10th 2013
     
    Good for you, ring. There is more collective wisdom here on this site than in all doctors' offices combined when it comes to carring for someone with Alzheimer's. Too many doctors routinely ignore the observations of caregivers. And why not? We only live with our spouses 24/7, so how could we possibly know anything that the docs don't observe themselves?! Keep being assertive and keep asking questions!!
  6.  
    To add to what acvann said. If you get/have a Dr. who is really not helping, or listening don't be afraid of finding another. We had a non-listening, no-helpoing one and I found a new one. At our first appointment there the Dr. told me I was the most important tool he had in treating my, DH, because I was with him 24/7 and he couldn't possibly get that knowledge during an office visit.
    • CommentAuthorxox
    • CommentTimeFeb 10th 2013
     
    My wife's psych is in charge of the drugs and she gives me some latitude for some of them since she knows on some days my wife needs something other than the usual dosage. She assures me that with these drugs we are nowhere near the maximum dosage.
    •  
      CommentAuthorNikki
    • CommentTimeFeb 11th 2013 edited
     
    I have to agree with Divvi, without a doubt I know Lynn has lived longer than any of his doctors expected and it is no thanks to them, but to me and my insistence on how and when he is treated. It is so true that nobody knows our spouses better than we do! I had to chuckle about the doctor trusting you and just sending out meds Divvi, same thing is happening with us. It is nice to finally be listened to isn't it :)
    • CommentAuthordivvi*
    • CommentTimeFeb 11th 2013
     
    i would hope all of us could get to this point of having the professionals listen. :) nikki, good to hear from you. my best to you and lynn.
  7.  
    Over the last couple years I have wanted to try certain medications (Marinol, Neurontin) and Lloyd's neuro has refused to prescribe them. So-o-o I go to the family doctor, tell him what I want and he writes the prescriptions. Our family doctor delivered my oldest child who is now 42 and I really worry about what I will do when he is no longer around! He has always been willing to try anything...God bless him! And since I told the neuro that Lloyd needs liquids, I can give him only as much as he needs and not as much as the neuro wants.
    • CommentAuthorCharlotte
    • CommentTimeFeb 11th 2013
     
    Linda you are so fortunate to have had the same doctor for so long. Over the years I have had doctors I liked but we either moved or changed insurance. Moving was under my control but I had no control over the insurance: if the employer changed you did too. And it was always a company the old doctor did not accept. It makes it really hard for a doctor and patient to get to know each other.

    It was sad - last night I was listening to a doctor that is trying to get at the very least parts of the Affordable Care Act repealed. She was saying that PC are joining hospitals where they work 9-5 jobs, are not available 24/7 to talk to, rarely see the same person twice. This is so sad because how can a doctor assess a patient if they have no history? We all here know what going to a doctor for the first time is like.