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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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@laura1970 I want to thank you. I just pulled up the article on lequembe/Medicare and you are correct. It's covered under Part B Medicare and/or medicare advantage and a Gap plan the 20% remainder, or out of pocket for those with no Gap plan. Appreciate the info.
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1 Reaction@kjc48
It has been my experience both as an RN and caregiver for my Mom and now my husband that "the squeaky wheel gets the grease". Keep appealing the denial. If it is Medicare, I have appealed in the past for various denials and have had them approved. It takes time. I found it helpful to enlist the doctor, hopefully a neurologist in your case to add a note to the appeal stating that in his opinion the PET scan will provide essential information that will enable him to make an accurate diagnosis and then pursue the appropriate plan of care for your husband. I am praying for you and your husband. You are not alone. We are all here to support you.
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2 Reactions@jannew
My heart goes out to you and I wish I could give you a big hug. I would urge you to have your husband tested.
His primary physician ( hopefully someone that your husband is familiar with) can do a limited memory test in the office. The staff understand that he may not want to do this but can say that they are just doing what the doctor ordered. This would be the first step. It is terrifying to a person to be told that there is something wrong with them and that is probably what he fears. Acknowledging that fear and being reassuring-" we are going to deal with what ever the results are together. I am here for you" might help him accept the test. You are in my prayers.
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2 Reactions@ocdogmom
Gosh it's so good to see these supportive notes from people like you, both as an RN and caregiver for your Mom and now your husband. Life certainly has a way of dealing us a lot of things in the deck, we didn't even know were in the deck until we got slapped with it. I'm okay, I just find this caregiving thing so intensive all the time. My husband is in the mild stages, and seems to need to much care and reminding, and coercing like he was a child. I have to remember that he's trying and if that's the best he can do, then so be it, At least he's still aware of his surrounding and me, in his life. Thanks for the share. Appreciate you, and every other caregiver out there.
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2 Reactions@ocdogmom Thank you for your encouragement- I’m not usually overly assertive, but I feel so responsible for getting my husband the best care possible that I do intend to push for the approval of the PET scan. I especially appreciate your advice to have the neurologist write a note for the appeal a great idea.
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2 Reactions@elm123
Thanks to everyone who has responded to this thread, it is incredibly helpful to know we are not alone. I learn from all of your stories and am so grateful for both the opportunity to talk about things and the advice gleaned from your own experiences. My husband has a pcp appointment in early December as a first step in opening the discussion. I feel sure he will pass the basic in-office test as he is very functional and no one else is seeing anything wrong. But it is clear to me. I think we are at the very beginning of the journey. Warm thoughts to all of you, J.
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4 Reactions@jannew the doctor probably cannot speak with you about his condition alone without permission, but he/she is always allowed to listen. Don’t be afraid to contact the doctor privately and convey what you have observed and have worries about, often this actually helps the doctor do a more focused visit
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3 Reactions@jannew I can’t recall words many times so after an MRI & PET scan and APOE GENE test was referred to a neurologist who dx’d mild early alz because of amyloid & tau in my brain. I immediately did research with my GPT5 chat and learned a lot about alz. I will begin Lequembe infusions when my neurologist arranges it. There is fascinating research happening now for the tau aspect and completed trials for the amyloid. Lequembe is one drug already being used for amyloid. I am hopeful enough not to be too upset by the dx. I expected it as strong positive family risk. Also learned about need to sleep more, have schedule, exercise, take DHA/EPA supplements, and socialize. All have helped so far.
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4 ReactionsHow can it happen that a very capable, confident husband can become so totally confused, can’t remember something for five minutes, and I know it’s nowhere’s near as bad as I guess it eventually will be. Sometimes I think I am going to lose it myself ! ! And, I think, what in the world am I going to do ? ? How am I going to keep on ?
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3 Reactions@dederickve , is your husband getting infusion medication for the cognitive issue? I’m reading all I can about what degree of benefits they can provide. Short of that, traditional medication for dementia in pill form helped my dad’s symptoms for a while, but otherwise it was a sad decline. To help with the stress, getting outside help to cone in in a regular basis was invaluable. Also, have backup available you can call 24/7. We retained a home health agency that did both.
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