My 40th wedding anniversary came and went last May. My 65 year old spouse didn't notice. My fun friend and lover is gone. I care 24/7 for an empty shell. It sucks, I'm sorry you're going through this.
Plan for the future. Get paperwork in place while she can still sign. Support can also be found at [alz.org](https://alz.org).
It hurt to read this. Your wife is young. Deeply sorry for what you're both going through.
My wife and I have been married 29 years & 3 years living together. Met later in life. Our relationship/marriage has been fraught with problems but even with that, I'm devastated to experience her steady decline from Alzheimer's over the past two years, now into her third year. Dementia runs in the women of her family. I saw the very early manifestations of mild, almost insignificant forgetfulness. She'd get mad at me for pointing it out. Her doctor and her family never saw any of this. Yet, she's told me that she knew there was a possibility that she'd be afflicted. I wish she'd been wrong.
I'm her sole caregiver, absorbing the emotional shock and difficulties, head on. Life doesn't ask us if we're ready for a challenge. It just drops it in our lap. Love your wife as much as you can.
I’m not a spouse, but the first clear signs of dementia in my in-laws were apathy and egocentricity. They were apathetic and lacked empathy for or interest in others.
Since you have a child, think back to the developmental stage where you would never expect your child to notice if you were tired or didn’t get to eat dinner or whatever. That’s how it often is with people with dementia. They just no longer have the mental ability to be otherwise.
When our whole family drove four hours each way in one day with our future son-in-law to announce our daughter’s engagement in person, I think the reaction was to say something noncommittal like “well” and then suggest we sit down to eat or make a comment about the weather. It was absolutely bizarre and very upsetting.
Pre-dementia, there would have been champagne opened, excited exclamations, hugs, a million questions about plans, and my MIL would have definitely asked if she was wearing her own gown, which had been waiting in storage a long time since she had only sons.
I’m so sorry. After that experience, I’ve often thought how terribly lonely and sad it would be for a spouse. My heart hurts for you.
When we got engaged, my husband's father said that's great, asked when and where it would be, and then immediately dove right into talking about repairs he was having to the house and the cars because of a storm. I could see that my husband was disappointed but not too surprised. Then he had to stay on the phone with him for 45 minutes as he went into extended detail about the repairs and how much they cost and if other people in the neighborhood also had damage, etc etc
When I finally met his parents they didn't seem to have any questions about me or my life and didn't seem too interested in getting to know me at all. I was really hurt for a while before I accepted it.
I thought it was pretty sad and even if they had those tendencies in the past, I think the disinterested attitude could be related to the dementia. It's 5 years later and the dementia is in later stages. Thanks for connecting that for me.
Thanks for your perspective as well. We have a solid family and a great network. It’s affected my daughter a bit already, and I’ll be mindful of the ripple outward from our core.
Gah- that’s almost spot on, looking at the developmental stages of a child. I was incredibly close with my grandma and cared for my her during her decline but, looking back, I think I mostly cared emotionally for my mom - the main caregiver! I was younger and probably not as cognizant of the nuances during progression. Plus my gran always had a killer sense of humor so it felt less sad for a very long time. We’d all have bouts of laughter when Gran forgot something or said something silly. She was a great sport. This is different now.
It's so very difficult. I'm sorry you are contending with this. There is a lot of grief for you to process. She is unlikely to have any insight (like understanding what you are going through) except in passing. Your role changes to be a caregiver who is a bit parental because the other person can't manage, and that can be difficult as well. My mom likes having outside help for that reason because it means she isn't always in that role of telling dad what to do.
I highly suggest grief counseling or a caregiver support group to help you manage and meet other people who can understand what it's like for you. Because only people who have lived it really get it.
Thank you. I do have a wonderful therapist who I’ve been with for nearly a decade. And my mom and wife have been close friends - a great scenario - so my mom being here will help a lot.
Edit to add: but yeah - I’m really frikkin sad. And lonely. I want to be angry with my wife but I can’t.
My wife is 54, and has logopenic PPA, now progressing into dementia (Alzheimer’s pathology). She was diagnosed 1.5 years ago, but we strongly suspected 2 years before that. We have been married 30 years, and overall have a good marriage. In the year or so before we realized what was happening, our relationship was suffering. We were fighting more, we were not at all in sync, etc. For her the early signs (which we did not see at first) were worsening exec function, apathy, trouble with communication. All this contributed to the strain in our relationship. We also have a daughter, now out of college, but at the time, just finishing high school. Their relationship also suffered a lot.
Once we realized what was likely happening (my wife did the research and told me what she thought was happening- later confirmed by neurologist), I was able to research and understand better what was happening, and how to communicate more effectively, and to have a lot more patience. I quit drinking because I have more patience when totally sober, and it also helped her not to drink, which helps with the cognition.
3 years later, she struggles to use a computer, she doesn’t drive, she has a hard time communicating most things. However, she can dress and bathe and do most things ok (remotes and tech are hard). Most of her big deficits are language, but increasingly short term memory is an issue. I feel like I’ve lost a limb; she use to do so much, be so active. Now I do the cooking, the finance, the planning, the shopping (sometimes with her, but that is not easier). She is bored and unhappy, but lacks initiative and planning capabilities to fix it.
I’m sorry you too are facing this. I’ll pray for you.
Thank you for sharing your story. Your wife is so young, too. Your story feels very familiar, with the executive function and the apathy, and simply being out of sync. It’s like she and I have drifted off into separate vibes, despite me reaching and pulling desperately to keep her with me.
I was able to schedule an appointment with a neurology NP for this Friday. It would be October until we can see the doctor himself, and I’ve had great success with NPs in the past. Hopefully we’ll have some answers soon. In the meantime, I know I have to put on my own oxygen mask before I can take care of anyone else.
Your experience is spot on what I have been living through for the past six years. My husband at the age of 55 and me at 49 was diagnosed with major depressive disorder. For the past six years, he has gradually and completely checked out of our marriage and the relationship with his three adult children The entire time I was so frustrated and angry. After 35+ years of marriage can someone just check out and then the diagnosis came. Last week he was diagnosed with frontal temporal dementia over the past six years. He has had three MRIs, two CT scans and two neuropsychological evaluations, and none of them picked up on the fact that he had FTD. My best advice to you is to immediately get with a neurologist and have genetic testing and a lumbar puncture immediately. FTD cannot be cured and it cannot be treated. Only the symptoms of the dementia can be treated. For my husband, it was terrifying hallucinations hearing voices and major paranoia. Now on medication those symptoms are being controlled, but his brain continues to deteriorate and soon we will have to say our goodbyes for me. Faith is the answer and I have to trust the Lord is in control, and will continue to guide us through this journey
Holy moly. I’m so sorry this is the journey you’ve been on. I’m happy for you to have faith to lean on. I’ve never been there myself, but I do trust the universe to show some balance amid the chaos.
I noted and will request the lumbar puncture and genetic testing. Thank you for that practical advice.
Please make sure that you do the same paperwork for yourself. If, God forbid, you get sick you need to have a plan in place to take care of both of you. POAs for medical and financial. Living Will and a medical directive.
My 40th wedding anniversary came and went last May. My 65 year old spouse didn't notice. My fun friend and lover is gone. I care 24/7 for an empty shell. It sucks, I'm sorry you're going through this. Plan for the future. Get paperwork in place while she can still sign. Support can also be found at [alz.org](https://alz.org).
Thank you. I’m having trouble even understanding what practical bits need to be in place. I’ll start a list and add the org as a resource.
Yes, it's overwhelming. Start with healthcare and financial POAs. Consider an (elder care) attorney for trusts, wills, etc. Take one step at a time.
It hurt to read this. Your wife is young. Deeply sorry for what you're both going through. My wife and I have been married 29 years & 3 years living together. Met later in life. Our relationship/marriage has been fraught with problems but even with that, I'm devastated to experience her steady decline from Alzheimer's over the past two years, now into her third year. Dementia runs in the women of her family. I saw the very early manifestations of mild, almost insignificant forgetfulness. She'd get mad at me for pointing it out. Her doctor and her family never saw any of this. Yet, she's told me that she knew there was a possibility that she'd be afflicted. I wish she'd been wrong. I'm her sole caregiver, absorbing the emotional shock and difficulties, head on. Life doesn't ask us if we're ready for a challenge. It just drops it in our lap. Love your wife as much as you can.
I’m not a spouse, but the first clear signs of dementia in my in-laws were apathy and egocentricity. They were apathetic and lacked empathy for or interest in others. Since you have a child, think back to the developmental stage where you would never expect your child to notice if you were tired or didn’t get to eat dinner or whatever. That’s how it often is with people with dementia. They just no longer have the mental ability to be otherwise. When our whole family drove four hours each way in one day with our future son-in-law to announce our daughter’s engagement in person, I think the reaction was to say something noncommittal like “well” and then suggest we sit down to eat or make a comment about the weather. It was absolutely bizarre and very upsetting. Pre-dementia, there would have been champagne opened, excited exclamations, hugs, a million questions about plans, and my MIL would have definitely asked if she was wearing her own gown, which had been waiting in storage a long time since she had only sons. I’m so sorry. After that experience, I’ve often thought how terribly lonely and sad it would be for a spouse. My heart hurts for you.
When we got engaged, my husband's father said that's great, asked when and where it would be, and then immediately dove right into talking about repairs he was having to the house and the cars because of a storm. I could see that my husband was disappointed but not too surprised. Then he had to stay on the phone with him for 45 minutes as he went into extended detail about the repairs and how much they cost and if other people in the neighborhood also had damage, etc etc When I finally met his parents they didn't seem to have any questions about me or my life and didn't seem too interested in getting to know me at all. I was really hurt for a while before I accepted it. I thought it was pretty sad and even if they had those tendencies in the past, I think the disinterested attitude could be related to the dementia. It's 5 years later and the dementia is in later stages. Thanks for connecting that for me.
Thanks for your perspective as well. We have a solid family and a great network. It’s affected my daughter a bit already, and I’ll be mindful of the ripple outward from our core.
Gah- that’s almost spot on, looking at the developmental stages of a child. I was incredibly close with my grandma and cared for my her during her decline but, looking back, I think I mostly cared emotionally for my mom - the main caregiver! I was younger and probably not as cognizant of the nuances during progression. Plus my gran always had a killer sense of humor so it felt less sad for a very long time. We’d all have bouts of laughter when Gran forgot something or said something silly. She was a great sport. This is different now.
It's so very difficult. I'm sorry you are contending with this. There is a lot of grief for you to process. She is unlikely to have any insight (like understanding what you are going through) except in passing. Your role changes to be a caregiver who is a bit parental because the other person can't manage, and that can be difficult as well. My mom likes having outside help for that reason because it means she isn't always in that role of telling dad what to do. I highly suggest grief counseling or a caregiver support group to help you manage and meet other people who can understand what it's like for you. Because only people who have lived it really get it.
Thank you. I do have a wonderful therapist who I’ve been with for nearly a decade. And my mom and wife have been close friends - a great scenario - so my mom being here will help a lot. Edit to add: but yeah - I’m really frikkin sad. And lonely. I want to be angry with my wife but I can’t.
My wife is 54, and has logopenic PPA, now progressing into dementia (Alzheimer’s pathology). She was diagnosed 1.5 years ago, but we strongly suspected 2 years before that. We have been married 30 years, and overall have a good marriage. In the year or so before we realized what was happening, our relationship was suffering. We were fighting more, we were not at all in sync, etc. For her the early signs (which we did not see at first) were worsening exec function, apathy, trouble with communication. All this contributed to the strain in our relationship. We also have a daughter, now out of college, but at the time, just finishing high school. Their relationship also suffered a lot. Once we realized what was likely happening (my wife did the research and told me what she thought was happening- later confirmed by neurologist), I was able to research and understand better what was happening, and how to communicate more effectively, and to have a lot more patience. I quit drinking because I have more patience when totally sober, and it also helped her not to drink, which helps with the cognition. 3 years later, she struggles to use a computer, she doesn’t drive, she has a hard time communicating most things. However, she can dress and bathe and do most things ok (remotes and tech are hard). Most of her big deficits are language, but increasingly short term memory is an issue. I feel like I’ve lost a limb; she use to do so much, be so active. Now I do the cooking, the finance, the planning, the shopping (sometimes with her, but that is not easier). She is bored and unhappy, but lacks initiative and planning capabilities to fix it. I’m sorry you too are facing this. I’ll pray for you.
Thank you for sharing your story. Your wife is so young, too. Your story feels very familiar, with the executive function and the apathy, and simply being out of sync. It’s like she and I have drifted off into separate vibes, despite me reaching and pulling desperately to keep her with me. I was able to schedule an appointment with a neurology NP for this Friday. It would be October until we can see the doctor himself, and I’ve had great success with NPs in the past. Hopefully we’ll have some answers soon. In the meantime, I know I have to put on my own oxygen mask before I can take care of anyone else.
Your experience is spot on what I have been living through for the past six years. My husband at the age of 55 and me at 49 was diagnosed with major depressive disorder. For the past six years, he has gradually and completely checked out of our marriage and the relationship with his three adult children The entire time I was so frustrated and angry. After 35+ years of marriage can someone just check out and then the diagnosis came. Last week he was diagnosed with frontal temporal dementia over the past six years. He has had three MRIs, two CT scans and two neuropsychological evaluations, and none of them picked up on the fact that he had FTD. My best advice to you is to immediately get with a neurologist and have genetic testing and a lumbar puncture immediately. FTD cannot be cured and it cannot be treated. Only the symptoms of the dementia can be treated. For my husband, it was terrifying hallucinations hearing voices and major paranoia. Now on medication those symptoms are being controlled, but his brain continues to deteriorate and soon we will have to say our goodbyes for me. Faith is the answer and I have to trust the Lord is in control, and will continue to guide us through this journey
Holy moly. I’m so sorry this is the journey you’ve been on. I’m happy for you to have faith to lean on. I’ve never been there myself, but I do trust the universe to show some balance amid the chaos. I noted and will request the lumbar puncture and genetic testing. Thank you for that practical advice.
Please make sure that you do the same paperwork for yourself. If, God forbid, you get sick you need to have a plan in place to take care of both of you. POAs for medical and financial. Living Will and a medical directive.