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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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@dederickve
Thank you for your understanding response. It is true that people who are not living it don’t see it, and even if they have an inkling, can’t know the impact of all that is happening. Also, they may not find they can acknowledge it because of what it means for them personally too. I understand that. So it’s up to us frontliners to learn and do the best we can, not easy to accept, and for me at the beginning of things, a lot of fear and worry. But I am so glad to have found this community, just the sense of not being alone has given me a big boost. Good wishes for you and your loved one as you travel along this journey.
J.
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4 ReactionsThanks so much, jannew. Yes, I, too, am so glad of this site. It helps my frame of mind.
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5 ReactionsThank you for sharing your story. I just posted today in this site how important this community is for caregivers. I will add, even if just to vent out loud. You’re on a caregiving journey similar to many of us within this Mayo Clinic community. Know that you’re not alone. It’s so tough to be present for your loved one while keeping yourself intact. If you don’t already have a stress release outlet, I recommend daily affirmations, yoga, coloring books, knitting and anything else that makes you focus on something other than your caregiving responsibilities. Just a break each day does wonders in keeping me sane and able to communicate with my 86 year old Mom diagnosed with Mixed Dementia/Alzheimers.
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3 ReactionsI feel your anxiety and stress. My husband was struggling with mild memory loss. His primary physician finally tested him and sent him directly to a neurologist. Getting help with this disease is better to do sooner than later. He has started with the infusions that are every other week. They are going really well, but not seeing a significant change yet. He is also going to a speech therapist who is teaching him how to use new methods to remember.
He is keeping a notebook to write down things that are important to remember.
You are doing the best you can and this website is a great way to find information and vent!
Sending hugs!
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3 Reactions@rebbie28
Thank you for your response and sharing your experiences. It has been so very helpful to hear from others on the forum, such kind support, helpful strategies, and encouragement. I appreciate your comment and very best wishes to you and your husband, hope the infusions help as time goes by. A big hug back you you, J.
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2 Reactions@lmr23
Thank you for your response to my post. I so appreciate your comments, this community is so compassionate and supportive, it has already helped me a lot with the fear and stress, strategies for coping, and acceptance. Knowing I am not alone is really huge! Thanks for your tips for coping, I do try to be mindful of taking care of myself (I do yoga and quilt a bit). It has been a bit overwhelming to see our futures not being what we hoped for, so a bit of sadness and grief too I think. But it is making me accept reality and appreciate the present moment. Well, trying! Thank you and best wishes for you and your Mom, J.
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3 Reactions@jannew
My husband was just (Finally) diagnosed with early Alzheimer’s and your experience is so much like mine. For as long as 3or 4 years ago I knew something was wrong - my husband would easily get lost even when driving to very familiar places. In the last year though things got progressively worse and as much as I wanted to deny that something was wrong, I knew it was. I went for a check up at our PCP’s and during that appointment, I gathered my courage and I explained everything that was going on (delusions and anger towards me). The doctor made an appt for my husband and I told him it was for an annual physical. Long story short he went on an antidepressant and things were much better. The Dr told my husband he needed to see a neurologist, so we did and after blood tests and an MRI he was told he has Alzheimer’s. Now we are waiting for approval for a PET scan in order to start one of the new infusion treatments. I am hopeful it will help slow the progression down.
Anyway- just wanted to say I understand all the feelings and difficulties you and others have described in this forum. Another big help for me was to talk to a therapist. I felt so alone with this. To this day I have wishful thinking that it will go away and we will be back to what we were. But I know that will not happen, so I’m trying hard to live our lives the best way we can. Best of luck to you and your loved one. At least this forum helps me to realize I’m not alone.
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4 ReactionsI am wondering if anyone out there is having this dilemma. I know that Alzheimers is not curable. My husband has moderate dementia and left early dementia over a year ago. As far as I know the only treatments out there are drugs that slow the progression of the disease but come with the burden of getting him to an infusion center on a regular basis ( he needs a WC to get around) and the possibility of significant side effects, brain swelling among others. He is not capable of understanding the need for any treatment and what the desirable outcome would be. Is it ethical to try to convince a person with dementia of a course of treatment for a disease he doesn't even realize he has and has no cure? He won't understand why he is getting this treatment. We are still in the process of going to the Cancer Center for maintenance autoimmune injections for his lymphoma that is now in remission. He does not comprehend the reason for being there. He cooperates I think because we started the chemo and maintenance drugs before his dementia worsened this year.
Right now he is at home with me and is getting 24/7 care by a registered nurse-me. We can afford help and I am taking advantage of that. When we made out our durable powers of attorney and advanced directives we both stated the desire to avoid any life extending treatments preferring to prioritize quality of life instead. Still I worry that I am not making the right decision for him. Anyone in this situation? Any thoughts?
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3 Reactions@ocdogmom , that’s a lot to deal with and I understand how stressful that would be. Fortunately, he has an advance medical directive that instructs you what to do. I’d take comfort in abiding by his requests. Have you explored Dementia meds that are in pill form?
My father had an advance medical directive too and we honored it. At a certain point, went to comfort care only. Traditional meds in pill form for Alzheimer’s helped him a lot.
Treatments are wonderful for patients who understand and want them, but after that…..it’s more complicated.
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4 Reactions@celia16
Thank you for your thoughts. I really appreciate your support. My husband is currently taking an oral medication for his moderate dementia -Aricept daily. He does not object to taking his any of his pills though he could not tell you what they are for. I have discussed our situation with his internist in whom I have great confidence. He agrees that little if anything would be gained by any further treatment. He agreed to signing a POLST- Physicians Orders for Life Sustaining Treatments. This document details what we feel would actually provide the best quality of life for my husband. Basically "comfort care" as you did for your father. I just have doubts sometimes as to my decision and ability to do the right thing for him. Thank you for your support. It means a lot to me.
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