There is a hobby that some adults enjoy; adult coloring. I don't enjoy the coloring books, but I like the ones that are postcards or note cards. It allows you to get creative and share your art work with others. I'm not artistic at all, but with this, there are no right or wrong ways to express yourself. I like the colored pencils better than the pens, as it allows more subtle shading. The photo above is a postcard I just sent off to my mom. Kind of relaxing, and my mom seems to really enjoy getting them.
The last week or so I've noticed that Jim needs reminders to put used utensils and cups in the dishwasher. I was surprised the other day to find him simply rinsing or wiping off his fork and putting it in the drawer. It's happened a few times now, so I need to make sure I'm close by when he is fixing himself a snack, or something to eat. I'm real casual about it. As I see him ready to just rinse or wipe, I go over and say something like "do you want me to put that in the dishwasher for you?" It works. Just another change for us to adjust to.
Late last week, I received an unexpected phone call from Jim's physician (not the new one, the prior one). The call was prompted by the request for the transfer of records to Jim's new physician. As I've written before, I was never able to communicate properly/privately with Jim's physician. The size of his medical practice made it near impossible to speak with him by phone, privately, without Jim nearby.
(Background information: Jim never agreed to let me come with him to his doctor appointments. I think he was afraid I would mention my concerns about his memory. H also absolutely forbid me to ever say anything to Dr. C about any of these concerns.)
When Dr. C called, he called my cell phone. He had tried our landline, but obviously there was no answer since we are in FL. Perfect! When I realized who it was, I quietly said to Jim "it's my mom; I'll go in the bedroom to take the call".
Dr. C said the call was a followup to see why Jim was changing physicians. The floodgates opened, and I proceeded to tell him Jim's situation. Interestingly, he said he had noticed some minor issues with Jim's memory, and repeating himself, but he had not picked up on anything else.
I guess that doesn't really surprise me. The quick office visit to listen to your heart and lungs, draw some blood, do an ECG, would not necessarily lead to a conversation that would reveal significant deficits.
When I explained all of what is going on, he was shocked, to say the least. The conversation was a good one. He went on at length to offer help, referrals, whatever I needed, even if it was just to come over and talk to Jim.
What if this conversation had happened several months ago? Would I still have pursued the transfer of his care to a gerontologist? I don't know, and I guess at this point it doesn't matter. As I've mentioned in prior posts, I've already met with Jim's new doctor, so she is aware of his issues; I feel confident about her ability to work with me to help Jim with his anxiety and other issues.
As a new patient, the first available appointment with the new doctor is in April, which means we are kind of in limbo right now. Her practice recommends going to urgent care for issues that cannot wait until the first appointment.
I've mentioned in previous posts that we will fly back home the end of March. I've arranged for a friend to drive our car back home for us. This should minimize the stress for Jim to just one day, as opposed to 3 days. Our drive down was just short of a disaster. I am still left with worries about the flight out of Orlando, which is an international airport. It can be confusing and overwhelming even for the most astute.
After my conversation with Dr. C, it occurred to me that he may be willing to help me with an Rx for a sedative for the day of travel. Given that Jim is kind of in limbo, I'm not sure that he will be willing to do so. Technically Jim is no longer his patient. But his new doctor, who has not even met Jim, would be very unlikely to prescribe anything without seeing him first. Understood.
So, with a bit of trepidation I penned a letter to Dr. C, requesting help with a sedative for this one day of travel. Will he oblige? I don't know, but I am hopeful.
One thing that I do know (that I acknowledged in my letter to Dr. C) is that prescribing sedatives for someone with dementia is very tricky. Even something as seemingly benign as benadryl can increase confusion in those with dementia. Valium, a common sedative often prescribed, can also increase confusion with someone with dementia.
Sometimes a beta blocker (such as propranolol) is used; it slows the heart rate, lowers BP, and results in calm.
Dr. C knows Jim and his medical history, so I trust his judgement in whatever he recommends. It also occurs to me that he may decline, or that he may say that the risks outweigh any benefit from a prescribed sedative.
I don't know, but I figured it is worth a shot.
Well, another post is written and my heart is lighter. So many times I question my judgement about things. But I know that I am doing the best that I can and I need to make sure that I am kind to myself.
Thanks for stopping by. Sometime I think the the conversations we have in the comments section add a perspective that I could never provide. So for that I am ever so grateful 😊
24 comments:
I don't see why his old doctor can't write him something, it hasn't been that long. Of course he may not have been aware how things were progressing. Sigh, I hope he give you something for the trip home. How heavy is Jim? I mean - can you handle him if he becomes jello? Everyone reacts to that stuff differently.
I like your hobby. My brother used to use colored pencils for artwork sometimes. He would 'color' some pencils on sandpaper and dip a Q-tip in the resulting dust, and then 'paint' the more subtle shading. I hope that makes sense.
Well, if Jim turns into "jello", I am in trouble. I'm on the small side, and Jim is what I would call average, about 160 pounds. Yes, there are certainly risks with the meds, especially not knowing how he will react.
I understood perfectly your description of what your brother did with the pencils. I'll have to try it! Thanks SJ.
Maybe you could ask his doctor for two doses and try one the week before you fly to see how he responds to it. Could you have a friend fly with you to have extra help if you should need it? Good luck. I hope everything works out well.
It's a difficult one but the doctor should know what effect the tablets would have on Jim. You must feel that every day there are new decisions to make.
I have coloured that very same picture! Some of my pencils are classed as 'brushes' but I didn't get on with them very well. Sadly I no longer do any colouring because leaning over plays havoc with my back. Maybe one day I will be able to resume the hobby.
Hi Karen. Thanks for stopping by. I thought about the two doses...in my letter to Dr. C I asked him to give me another call. I'll see what he thinks about that.
I hadn't thought about having someone fly with us (this is why I love the comments; I learn so much!). I'll explore this further, starting with availability of another seat on our flight home.
Hi Valerie. I know what you mean about the leaning over and back issues. I have to be careful when I color not to spend too long doing it, or I feel it in my upper spine.
You are right, I feel the full weight of the responsibility for Jim. New challenges coming my way, and I try to prepare myself mentally for the future.
I am so glad you were able to get a chance to talk with his doctor in private and tell him what is going on. Even though this is the hardest part, not having the support you need, you are coping very well, it seems to me. Jim is so lucky to have you as his advocate. I hope you get that sedative for the flight, which should help immeasurably, although I didn't know how differently sedatives affect dementia patients. I'm learning a lot, too.
It felt good to be able to tell Dr. C all of what is going on. I do have mixed feelings about the sedative. I carry the weight of responsibility for Jim's well being, and I never want to do anything that would harm him in any way. I guess that's why they call it a balancing act.
In my working life, I worked mainly with elderly folks with reduced kidney function. Medications have to be dosed accordingly, or else there is risk in doing harm to the person. Plus, everyone reacts so differently with medications, it's important to proceed with caution.
Karen read my mind about the two doses to see how he would react before you try the plane trip. Hopefully he wouldn't have two different reactions. Hope he gets back with you with some good advice.
Carole, (you may already do all this, but....) I found that a good cell phone is a miracle at times - I upgraded to a simple smartphone, so I could get email easily and not have to go to the computer. Found a calendar function so I can make appts in the doctor's office and not have to go home, study the calendar and call them back. The fact that it's a different phone number is helpful - I give this number if I want a private connection with a doctor or other person, as well as if I need to be reached when out. And I don't hesitate to suggest email as my preferred communication since a phone call leads to questions like, "Who's that?", which might get awkward. I also tell people to please leave a message if I don't pick up, and that I will get right back to them. That allows me to take a look at who is calling and defer answering until I have the privacy to do so.
Yes, I'm expecting that he will call me back. When he called, I could tell that he really did care. I just have to plan as best as I can, and then hope for the best. Fingers crossed!
Thanks Jan; all good points! I do have a smart phone and for the last couple of years I've been giving my cell phone as the contact number for both of us. Jim's constant presence/hovering still presents challenges, although with my plan to get some help/relief, this aspect should improve.
Identifying email as the preferred manner of communication is a good idea, one I hadn't thought of. I love that we can share ideas about what works, what is helpful as caregivers. Thanks Jan.
I hope Dr. C is obliging and will prescribe something for Jim's day of travel. It was nice that he contacted you to ask why you were changing doctors. I changed doctors last year and never heard a peep from the doctor. You're right in your thinking that office visits don't give you the necessary time to really know the patient. Sad truth of today's health care situation. Tehachap
Hi Tehachap. Thanks for your comment. I mailed my letter to Dr. C this past Monday, so I'm guessing he'll get it in about three days. I'm hoping he'll give me a call this weekend. The call I received from him was from his home on a Friday evening! Now there is a doctor who cares.
Well, I'm glad he called and I hope it works out. I use lorazapam (similar to Xanax)when I fly and find it helps with anxiety but don't know anything else. Best of luck on your trip home!
Thanks Tom. I remember when Jim's mom was diagnosed with dementia 25 years ago, they didn't know as much as they do now. One of the meds that her doctor prescribed caused her to have hallucinations. It's a tricky business prescribing for the elderly, especially when dementia is involved.
Carole, You definitely are doing your best and doing a wonderful job of taking care of Jim. I admire your patience and your willingness to share with your readers. I also used lorazapam for a time when I had anxiety issues with breast cancer. It is "mild" and can be used just in situations when needed. The small pills can also be cut in half or fourths if only a bit is needed to take the edge off a situation. I used them before having MRI's. I also wanted to mention a book that I just heard about yesterday that made me think of you and Jim. I have not read it yet but am going to look into it. It is called My Two Elaines: Learning, Coping, and Surviving as an Alzheimer's Caregiver by Martin J. Schreiber and Cathy Breitenbucher. He is a former governor of Wisconsin whose wife Elaine has been diagnosed with A. I read a few excerpts from the book and they were very good. Take care and I hope you are enjoying the FL weather....we just got 6 more inches of snow yesterday in Wisconsin.
Hi Sue. Thanks for your comment. And I appreciate the book recommendation. I will definitely look for that. It seems to help to read/share with other caregivers. I'm hoping for a good suggestion from Dr. C to help Jim through what will be a very anxious day for him.
I hope that the return trip is uneventful and not too stressful. Good luck.
Thanks for your well wishes Gigi. I'm hoping and planning for an uneventful trip.
You can also explain to the airlines about his dementia and do a priority boarding. Anything to make the trip less stressful.
I've been researching this more, and have learned a lot. Jet Blue in particular offers comprehensive support for those with special needs. I'll be writing more about this in a future post. Thanks Karen.
It is so good to hear that Dr C phoned and that you had a chance to have an extended conversation with him and explain Jim's issues. I have been thinking about your remark about how things might have been different if you could have had this conversation with him months ago. Because of patient confidentiality issues, family members are often in a very awkward situation, even when their loved one might no longer be competent under the law. I have a family member who has a mental illness, and who has no self-awareness of it. Although I am not the direct caregiver, I and other family members have been in the situation of advocating for them, arranging care for them, and acting as intermediary with upset members of the community (all from a distance). I have found it rare to find a health professional who will share any details of this relative's diagnosis or prognosis, or, in some cases, even be willing to speak with one of us.
Jude
Yes! That is the challenge! I have already met Jim's new doctor (during my own appointment; Jim's first appointment isn't until April). And she is very willing to work with me as an advocate/spokesperson for Jim. So for this I am grateful. Sounds like you have first hand experience with these kind of challenges. I appreciate the privacy laws, but sometimes they stand in the way of good clinical care. Thanks for your comment Jude.
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