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Husband developing memory issues
Hello everyone, I am new to this site as I look for some information, advice, and support with my husband's changing memory issues. I have read many of the posts and appreciate the sharing of stories and the compassionate help provided. This may be quite long, but here goes!
My husband is 76, I am 74. Over the past three to four years, I have noticed his occasional unusual memory lapses, which I had hoped was normal, age related memory loss, though I was concerned. For instance, we have walked our dogs on the same daily route for many years, and several trees were cut down around the corner from us. We love trees and were sorry to see them go. A week later, I commented on how I missed the trees, and he said there had been no trees there. This was a very different kind of forgetfulness in that he simply had no concept of there ever having been trees there before. Life moves on, and occasional things happened, like forgotten conversations. But in recent weeks these incidences have become rapidly more common, almost daily, and my husband gets frustrated and angry with me as I try to figure out what is going on. A few days ago, he told me "Hannah's car is parked outside". I said " who's Hannah?" (we don't know a Hannah). I looked puzzled and after a few back and forth questions and answers, as he got increasingly frustrated with me, I realized he was talking about our neighbor Rachel, who we know well, socialize with, and talk to often during the week. When I asked if he meant Rachel, he looked confused and said, yes, it is Rachel...who's Hannah? Also I'm now regularly seeing forgotten conversations about anything from casual to important, forgotten by the next day.
I was able by chance to talk alone with his PCP, who was subbing for my PCP for a check up I was having. He asked if I wanted to get my husband in for testing, but I'm not sure if we are there yet. For one thing, he denies that has memory issues, and insists that I am wrong. It is also the case that this is not all the time, and he frequently has a better memory than I do. Some days are fine. But I don't forget conversations or the names of people in our close circle, or to get the chickens in at night, which he has done for 30 years.
I am feeling anxious and with a sense of dread as things are quickly changing. I have a lot of lifetime experience with dementia.
My grandma and mother-in-law both developed dementia and both suffered for 15+ years. I was not the primary caregiver but the daughter of one and daughter-in-law of the other, and was a support, shoulder to lean on, and compassionate listener for most of my 20's and 30's, and then my 50's and 60's. My husband was primarily responsible for his mother's care for the last years, although she was not living in our home. Both ladies followed a similar path, becoming verbally abusive and physically aggressive and violent, to the extent of causing injury to family, caregivers, and other residents in memory care. It was indescribably hard. And I know you will know this.
My support is limited, our few remaining friends are older than we are and are having significant health, and beginning memory issues of their own. They need our help. We are emotionally close to our daughter but she is 400 miles away with a new baby, and I know this is not her burden to bear. I know I need to learn to accept what is happening, but the realization is only just hitting me, and based on my past experiences I am feeling stressed and terrified.
So that is my story. Thank you for reading and listening. I so appreciate that you are here.
J.
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P.S., taking notes in a journal with dates may be helpful. When you return for his next Neuro check, you will have anecdotes detailing his different behaviors and changes over the months, and you can summarize these changes in groupings (e.g., difficulty with temporal items: time/date/month, forgetting or substituting words, personality changes, gluttonous behaviors, etc. ).
I summarize the notes and give to Neuro doc when we have my husband's appointments.
All the best.
@tracidw I love this.. framing it to why it's important to us. And yes, teeing up the new medications, that offer hope, and treatment in its early stages. I was out the doctor's today, and we were talking about the "new" dementia treatments, and she is in the medical field, and didn't know there were FDA approved treatments to help with mild cognitive impairment.
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2 Reactions@jannew
@celia16
Yes, I see that, we will keep working on this, and will find a way to get to the dr. Some very wise words here on how to do that and great support for the process.
Where we live, we are looking at a standard wait time of 2 months for a primary care appointment, and 4-6 months for a neurologist. I don't know if these kinds of issues warrant a prioritized appointment? It is scary to think that even acting today it could be 8 months before he can see a specialist. I wonder what others' experiences have been with care and treatment timelines?
Many thanks, Celia, being new to the forum and not the saviest, I'm not sure I am using it correctly and getting back to everyone!
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1 Reaction@judimahoney
Really good idea, I am just at the point of starting to accumulate examples so it will definitely help to write them down. I am finding that my husband is also having major issues with attention, tasks that he has routinely done for deacades get started and abandoned, even something as simple as setting the table for dinner. He is also seems to have a low grade agitation all the time. What has been traumatic is how quickly and dramatically this has happened, which definitely makes me wonder if it could be med related as prior to starting Atenolol in the spring he was not like this. Thanks for your very helpful thoughts, and best wishes for your continuing journey, J.
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1 Reaction@jannew , you seem quite forum/posting savvy to me. I do wish you could get in sooner with his doctor, but that’s not in your control. Not sure where you are located. Some places are very booked up.
With my dad, he was seeing his PCP all along, so he saw the gradual progression and noted it in his file. Fairly early he offered the standard dementia pills, which my dad took. Started with one then added the other later. Really helped. Daddy was on them for years. He had slow progression and never got to a level you might expect after so long. At some point, daddy got an MRI. All it showed was that he hadn’t had strokes, no injuries, no fluid, no tumors. He did word circle games for a long time. But, Alzheimer’s did eventually become fatal.
I got my cousin in with a PCP in about 2 weeks. I explained it was urgent! She was having a lot of symptoms mental and physical. Bizarre behavior. Her primary had retired. I handed the doctor a letter describing the symptoms. She gave exam, took blood and gave Mini Mental Evaluation. She then diagnosed her with severe vascular dementia and referred her to a neurologist at my request. She also ordered an MRI so we would have it ready for the neurologist. We got the MRI in about a week, then saw the neurologist in about a week after that. The neurologist looked at her records, MRI and did office evaluation. He told us it was vascular dementia.
That provides a time line from my experiences. I’m sure it varies by area.
@jannew
The meds part is so confusing.
My husband's primary physician took him off a med he was on for about 3 months. He changed so drastically his doc took him off those, yet didn't prescribe an alternate. The meds were not supposed to improve cognition, but they were supposed to keep him from getting worse for up to several years.
Sometimes I feel like I know more than his doctor, just from reading these posts the last few years.
@jannew
Can you call his doctor and ask about the effects of Atenolol on his memory and agitation? It could open the door for them to want to see him to review his medications.
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