I’d like to preface this with a reminder that I am writing from a caregiver’s perspective. I have no medical training; I spend my days in the trenches of corporate finance. However, I unexpectedly find myself engulfed in a pharmacological tsunami, and I don’t feel as though I’m faring well at all. I have to believe I’m not alone; there must be other caregivers feeling just as overwhelmed as I.

The Great Drug Debate

My dear mother is in the late stages of Alzheimer’s and is living in a lovely group home with four other ladies in various stages of the disease. We are blessed to have the best care imaginable, but I constantly worry about the future. Our goal is to have her live out her days where she is, in a wonderful place surrounded by love, and cared for by incredible people.

Once again, we are struggling to find the right combination of drugs to manage her behaviors and keep her comfortable without turning her into a zombie.  On top of the psychiatric meds and due to recently diagnosed orthostatic hypotension, we’re also making changes to a couple of other things. To add to the mayhem, we’re adjusting calcium channel blockers and beta blockers in addition to the usual anti-anxiety, anti-seizure, anti-psychotic, and anti-depressant drugs. Oh, and let’s not forget the antibiotic being used to treat a UTI.

Information Overload

I’m dealing with a neurologist and a primary care physician that have differing opinions, and I feel like I’m watching a tennis match in hyper fast forward mode. I’ve scoured the Internet for every bit of information I can find on these various drugs, their side effects, interactions, and off label uses. Add to that the two cents of every other person that crosses my path, and at the end of the day, my head is spinning. I find myself inundated with an overabundance of information and more questions than answers.

For some reason, this week I’ve been overcome with fear of the unknown and uncertainty about what to do next. I’m emotionally and mentally exhausted, and I’d just like my fairy godmother to appear on my doorstep with an instruction guide. But alas, that isn’t going to happen so I’ve got to get my head together and keep slogging forward for my mom.

Sink or Swim

How wonderful would it be if the various and assorted clinicians would actually talk to one another directly rather than through me. Let’s face it; almost every bit of this is trial and error. No two Alzheimer’s patients are alike, and for even the most gifted physicians, most of the time, it’s a shot in the dark. So with that being said, I suppose I’d better just put on my big girl panties, grab a life jacket, and hang on for this wild and crazy ride…

Are you feeling overwhelmed? Have you ever felt like the medical professionals in your life are all going in different directions while you’re struggling to keep up? We would love to hear about your experiences and coping mechanisms in the Comments section below.

 

 

 

4 Comments

  1. Elaine Mansfield

    Oh Ann. How I resonate with the Caregiver’s Blues. First it was my mom who died in 2007 of Alzheimer’s after a 12 year bout. Then my husband in 2008 with a rare incurable cancer treated with an admitted trial and error approach. Now my 96 year old mother-in-law who lost her only child (same guy as my husband) and has incredible mental powers but waning physical powers. With her, I’ve backed off completely on involvement with medical care because she fires the aides I hire, refuses glaucoma drops, etc. So, I bring her soup and visits from my dog. Caring for those on their last legs is a tough job, attended by constant anxiety because we can’t fix the unfixable. I hope you can take a bubble bath, have a glass of wine, and read a good book. You’re winning just by offering all your love and concern. You have a lucky mom.
    Wishing you a peaceful Thanksgiving with no mishaps,
    Elaine

    • Ann Napoletan

      Elaine – Thanks for you kind words. Bless your heart, you’ve had your share of heartbreak, that’s for sure. I hope you have a lovely Thanksgiving as well. My daughter and I are heading on a little 3-day getaway; so looking forward to getting away from everything for a bit. Praying things will be okay here, but worst case scenario, if necessary, we get in the car and come back early…

  2. Peg

    Elaine – Uncharted Pharmacological Waters. I question sometimes what is the purpose behind all the medications that doctors give to elderly people. My mom has never been one for medications for long periods of time. Since her doctor has started following her HCD (Health Care Directive) Her anti-anxiety is at the smallest dose possible which means they cut the pill very small and administerate it to her 3 – 4 times a day which has helped her a great deal. The full dose would cause her to appear drunk and unable to function. I grant my mothers her wishes things that we had talked about before it came down to this, she does not want any long term medications, she doesn’t even want anymore testing of any kind which mean no blood workups, shots for flue which she is alergic too. For her quality of life that she fhas left should be enjoyable not zobie due to medications. Personal opinion. We all want what is best for our parents and I believe that as they were raising us they bestowed in us them so I must go by their teachings and know that if that is something I would want for myself and for my children to do for me then I must do my best to give them what they would like not all the drugs so pharmacies can become rich. Will they will help or hurt them?

    • Ann Napoletan

      Peg, we started my mom on hospice this week, and she was temporarily moved to the in-patient unit yesterday in hopes that 24×7 nursing care for a short period would help the docs find a protocol that will allow her to be awake yet calm. In lieu of that, we really have no choice but to sedate her since she is screaming almost around the clock and is in absolute agony.

      She is terribly dehydrated and has essentially no food or water for the past (almost) 48 hours. It’s so difficult to sit back and watch, but when she was of sound mind and body, she specified no artificial hydration or nutrition very clearly in her living will. We must respect her wishes as painful as that is… as you said, I would expect my daughter to do the same for me….

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