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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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@ocdogmom, we had a POLST as well. We kept it to provide the EMS and to take with us to the ER. The goal was to avoid the ER but daddy did go there once before he went on Hospice. Hope you are feeling more at peace soon. We do the best we can.
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1 Reaction@celia16
I too am trying to avoid the ER. We were last there in May when he fell, hit his head and had a brain hemorrhage. We were in there for hours because there were no beds available in The Neuro ICU. Finally the next morning he was transferred to the Neuro ICU and was there for 3 days. He could not be left alone because he was totally confused, tried constantly to get out of bed and pull off his EKG leads and his IVs. I will only have him taken to the ER if I suspect a broken bone after another fall and that would be for comfort care, same for pneumonia which can be treated to allow a better quality of life. He would need full time sitter in his room to keep him safe.
I pray that God give me the strength I will need for this journey. Thanks for responding to my post. It means more than you could know.
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3 Reactions@ocdogmom , glad it helps. My mom fell today. She broke her arm. She doesn’t have dementia, but poor mobility. They are admitting her tonight…..not sure what to expect. There seems to always be a crisis before me. You certainly know that that’s like.
Take care. I hope you can get some help. Please post how you’re doing.
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3 Reactions@elm123 You are not alone and thank you for sharing. My husband too, has MCI, and is on lequembe infusions that I worry day in and out about. I'm so worried about the brain swelling and bleeding but what's the alternative. I can still have conversations with my loved one, I even read him this morning's, "The Long Quiet" on this connect site, so we could talk about what we see happening, if and when it happens in the progression. It's all so overwhelming, that I'm trying daily to just practice gratitude. So many things have happened for us, and I'm asking myself every day, why. We've been living in a hotel to a rental, where I lost a lot of money, having to move out, then another rental, because our own house. THe day I found out about my husband's MCI was the day my house was diagnosed with mold, and a quick move out. All of that pales in comparison to MCI - and it's progression and to every caregiver that loves their partner and wants to preserve their dignity as long as they can. I'm trying hard to live our lives the best we can too, No, you are not alone. I'm there as well as all the others on this site, alongside you, every day. THank you for your share. My husband is going to his 5th infusion; he has an MRI this week before the 5th lequembe infusion. Just remember to check your Part D Plan during the enrollment plan, as we want to make sure the lequembe infusion (the medicine) is covered under a new formulary. There is so much to consider, it's frightening, when we don't know what we don't know.
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7 ReactionsKindula is a new drug you might want to check into. It can dissolve plaque in some cases. It’s a monthly infusion
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1 Reaction@celia16 Sorry to hear about you mom's broken arm. My mom fell and broke her arm when she was 95. She didn't have dementia. They put her in a soft cast first to let any swelling go down then a hard cast. She recovered well, I think because she was in good health for her age and more importantly the broken arm didn't keep her from getting up and walking around. She lived to 102. God, how I miss her.
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3 Reactions@elm123 You certainly have your hands full with all that you are dealing with. The unknown can be frightening as we don't know what to expect and therefore how to prepare. Being unprepared is really uncomfortable for me. I will keep you in my prayers and ask God to send you strength and courage.
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1 Reaction@ocdogmom Thank you so much for your kind words.
@ocdogmom
Being unprepared his uncomfortable for me too, but I personally do a list every day, so I can think through what I'm got to do/or done - one challenge after the other. Yesterday and today I finally felt a bit better. Still frightened but not so imprisoned by it. I'm finally walking up to the people that helped me move, gave me a hotel bed, found storage for me with my furniture, and this last lady that was a Godsend when she rented me her personal home for 3 1/2 months so I could get my husband and myself just situated while we're dealing with the medical as well. Yes, that's the gratitude I'm talking about where we're in this together and can draw on each other's strength. Thank you for reaching back. Prayers to you, too each and every day.
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2 Reactions@ocdogmom I read your note, and I wonder what I would do in the same situation, especially since he's in cancer remission and he's going for maintenance autoimmune injections. Maybe you should get a second opinion on his moderate dementia as I thought the infusions were helpful in the very early stages vs. once they bridge to moderate, but then I'm not a doctor. I've been thinking about taking my husband to Mayo in Jacksonville for a 2nd opinion, as we were in mold for an extended period of time, and I read that mold can cause memory loss. But his neurologist says, it's not from the mold as the pet scan and MRI, shows the amyloid plaque. It just amazes me how many people have MCI - Dementia. My generation grew up with so much cancer, and now this. This had to be around a long time ago, but no one talked about MCI or Dementia that I know of. I honestly, might go for a second opinion so you have more information on whether you should give him the infusions. Hey, you can always tell him it's tied to the lymphoma remission. I know, it's not the whole truth but if it helps him, that's all you care about.
Wow, there's so much strategy to this, for a caregiver, trying to figure out one day after the other, what you do next or should do next.
Overwhelming at times. Hope this help. I care about you and every caregiver out there, because I'm a caregiver and I know how lonely this feels, at times.
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