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I can relate to all of the above and I have a question. There's an elephant in our house. It takes up a lot of space but my husband with dementia and I ignore it. He searches for lost words and I supply them. He repeats the same stories endlessly. He depends on me for more and more things: making doctors' appointments, driving him to those appointments, telling it's okay when he informs me he's going outside for the hundredth time in an hour. (An exaggeration but not much.) My question is this: Should I bring up the subject of dementia with him? Should we have a conversation about what's happening and what's going to happen? I've been diagnosed with an aortic aneurysm and am now worried that I might not outlive him, which would be unfortunate to say the least. We're each other's power of attorney and I would like to name someone else to be mine or to take his place when he's truly incompetent to make decisions. I don't want to hurt his feelings or frighten him, but ignoring this elephant is not helping. I want to reassure him that I'll be with him through whatever comes but doing that would mean acknowledging something I'm not sure he's really accepted. He's seeing a neurologist on Friday and I'd like to talk to the doctor about this but hesitate to ask for some time alone with her. I think my husband would feel bad if I did that. How have others handled this? I'd appreciate any advice.
Replies to "I can relate to all of the above and I have a question. There's an elephant..."
Wow…you are so brave. Others will have better advice than I, but could you contact the doctor’s office ahead of time by phone to express your concerns? It has also been suggested to me to write a note and slip it to the nurse at the beginning of your appointment for the doctor to read before she/he meets with the patient. I have had similar concerns about my husband’s upcoming appointment. And yes, add someone as POA if you can do it. Best wishes.
Hello: the plan was for my husband and I to be each other's POA. When my husband's memory and other items started to take a hit, I changed my POA to be our daughter.
Can you write a letter or communicate to his doctor through the patient portal, or hand the letter to medical staff to give to his doctor, so you can communicate important info without your husband being present?
All the best, and so sorry about your own diagnosis. 🫂
Thank you to everyone who wrote a response to this. Good advice and I'll take it.
Your description of the elephant in the room rings true to me as well. Slowly over the course of the last few years I have started doing everything - pay bills, medical appointments, even driving a lot more.
The suggestions given here for making sure you can speak to the neurologist alone are well worth trying. I now realize the importance of the doctor hearing about ALL the changes you’ve seen, not just relying on a memory test.
When we finally went to see a neurologist - he only spoke to my husband and, after several tests (MRI, bloodwork, etc.), gave my husband a prescription for Aricept, without giving us a diagnosis other than ‘short term memory loss’. My husband had very bad dreams on the drug, so he stopped taking the drug and now we are proceeding as if nothing is wrong!
I wish you and your husband all the best as I totally relate to what you are experiencing. Finding a therapist and this online chat has really helped me.
Hi @pamela78, my heart goes out to you. This is probably one of the most difficult changes in your relationship with your husband that you will have to manage and navigate.
I was in denial about my husband's condition for a while, but knew I would have to face it. It's best to tackle it head on. It's heartbreaking, but you know what's best for the two of you, and you have the ability to implement a plan.
Fortunately, my husband was receptive to my informing his doctor of his memory and other deficits, having neurological testing, etc. He gave up driving and management of our finances easily when it was time.
I had open heart surgery around the time he was diagnosed with Alzheimer's, returned home and resumed caregiving duties. At the time, he was able to manage staying at a hotel near the hospital and taking a cab to see me everyday. I was in for two weeks with complications.
Would you consider giving the neurologist a heads up about the changes in your husband's behavior, functioning, etc. before the appointment? Can you send the doctor an email or have a phone conversation?
Also, request referral to a social worker or geriatrician who can map out what you need to do, as you do need to plan for both your futures.
I wish you the best.
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I can understand your concern. Does your POA document have a listed alternate? Most do. If not, I’d get a new one promptly. Whether you share that with your husband is a personal choice.
I’ve heard it is thought that telling the patient one time is customary. After that, it’s probably not helpful. I’m no expert. They will likely forget it at some point, but that’s an individual thing and you should do what you feel comfortable with. My cousin was told once by the neurologist and we didn’t discuss it again except, I’d say no one has a perfect memory. No worries.