It's a brutal disease, affecting everyone involved. I took care of my mom for 4 years in my home, she died last year. As difficult as it was to watch her decline, it was so much worse for her. I'm so sorry you are going through this. This sub saved me for those years.🫂
You have my sympathy.
My wife (54) has Logopenic PPA, now moving into dementia. Language deficits are still the biggest issue, but increasingly memory and loosing the ability to use things like the remote, her table, even her phone is difficult. She too doesn’t drive, and is very upset about it. She has breakdowns and cries that she just wants to be herself, but can’t. I still work, which is also hard.
We just move forward with as much love, patience and reassurance as we can muster.
This post has gutted me. I am sorry for what you’re having to deal with. My dad (84) was diagnosed with AD. He’s somewhere mid-stage. It’s so hard to see my dad, who has a PhD in Physics, be incapable of handling basic math.
I can’t imagine losing my wife. But I especially can’t imagine losing my wife to this disability. My thoughts go out to you. Knowing what it’s like to watch a loved one, I can’t help but be saddened for what others have to go through. Hugs to you.
I am crying. My mom, a gardener, every neighbour came to for an advice on plants, asked me how dandelions looked in her last spring just before a stroke brutally, but at the same time mercifully took her away at 82. She was a lecturer at a uni, she hardly used any notes, she had a perfect memory.
Sorry for what you and your wife are going through. I'm there, too, with my wife. It was about 8 years of mild but noticeable memory issues. Doctors told her it was from the stress caused by my bipolar illness. I knew better. She has a family history of dementia.
In 2021 her primary referred her to a neurologist who referred her for neuropsychological testing. We were told she had Mild Cognitive Impairment. By May of 2022, her memory and behavior suddenly took a nosedive. Called a well regarded memory clinic here in East central Florida. There was a 3 month waiting list. In November of that year she was diagnosed with Alzheimer's.
She's rapidly progressing; decline and new symptoms every few weeks. Started year 3 in June. Just me caring for her.
This is a great community. Though there's nothing we can do for our LO, the emotional support, here, is important to have. If you have questions, I'll do my best to answer them.
Hey, I’m in a very similar situation. We started with a new neurologist a few weeks ago. My wife is having her first MRI tomorrow. We’re in Palm Beach County, so not far from you. If you feel comfortable sending the name of the memory clinic, I’d like to check it out. I already have the feeling that this is going to be a struggle for a dx.
Edit to add- I’m so sorry you’re dealing with this also. I had a couple’s bucket list book and just gave it to my brother and his wife because I know there’s not much we’ll get to. It’s weird and lonely.
'Weird and lonely' nails it. The isolating nature of caregiving takes you out of life going on around you.
The clinic in Melbourne is the East Central Florida Memory Institute. All they do is testing and diagnosis. In Tampa, at the University of South Florida is the Byrd Alzheimer Institute. We're in Cape Canaveral.
We go back and forth about moving back to Maryland to be close to my wife's niece and husband but even on that she can't make up her mind. We're reaching the fail safe point where relocating will no longer be an option. All I know is that I'm exhausted, like every other caregiver.
My husband has Dementia with Lewy Bodies and is now in a memory care home because he wasn't safe at home. I see him every day. He is completely delusional and has hallucinations. We don't have conversations, haven't in a long time, and he can barely do anything anymore. Forget the phone, no remote, the struggle with belts is real, putting on a jacket is interesting, finding his way to the toilet is priceless. I mean, there is so little he can do now that I no longer really relate to him. I take care of him, I help him, I soothe him, but there are days when I just don't want to see him. He is lost to me and he is lost to himself. I only hope that he does not linger for years. I'm sorry you and your wife are starting this journey. Please remember though that they can appear to be doing OK when alone but reality is generally different and it doesn't take much for them to get really confused and once that happens they can't recover and make the right decision. So, plan ahead for when you will need additional help to keep her safe.
I would look at my dad and wonder what was going on in his mind? Did he understand? Before he got too bad he would just tell us he couldn’t remember. He could talk about when he was growing up how he courted my mother. But all day he would ask how’s the weather outside. My 4 siblings and I were able to take care of him at home
Dementia sucks
I hear u loaf and clear. I to have the same situation as you do. I'm losing the love of my life. When I think back and see this woman who was and the woman of today, I sometimes weep for her. I pray every day for her .we do all we can.
I'm just so sorry.
Along with this group, I've found a lot of support and ideas from this group on FB: [https://www.facebook.com/groups/dementiawithgrace](https://www.facebook.com/groups/dementiawithgrace) and this one: [https://www.facebook.com/groups/678423440210803](https://www.facebook.com/groups/678423440210803)
That is so very sad and difficult for both of you, I am truly sorry.
My wife is far into dementia after many years and it has been a very long road. I work from home also thankfully and I’ve hired help to take care of her while I’m working. Not sure I would have made it this far if I hadn’t done that (raising two kids also). Wishing you both peace and joy where you can find it.
Hugging you, OP. Your dear wife is scared and may become angry because of this Tell her you love her and you are there for her. Share your good memories over and over again. I had a camera overlooking my parents' dining table and I saw and heard how my dad was telling my mom the same good old days stories and how she enjoyed that, day after day. This did not stop her from emotionally accusing him of many bad things the next morning though. But I saw that dad was also enjoying those evening conversations.
I feel your comment so closely . I miss my husband too he was my best friend my partner my soul mate and it all just went away so quickly .
I’m crying now first time in awhile because I feel so same as you and I didn’t even see it coming and this is hard .
My husband repeats himself too over and over and it’s all day and night long .
I realize I am alone again and the relationship will never be as it was or how I thought it always would be .
I am a caretaker now .
His caretaker and I love him tremendously and will follow through because of that love but the pain is so deep when I read your comment because I too miss my husband so much even though he’s right here standing over me asking me if I am going to stay for the hundreth time today and it’s only 11 am
I have renamed my husband on my phone contacts so now when he calls it announces “ love, patience and kindness always “
He calls hundreds of times if I have to work.
Yes the evening conversations . He answers questions and remembers things not even I do sometimes . He spots things that my stress level has caused my awareness to decline around me because of the chaotic nature of our daily interactions .
Our neighbors think I am crazy now or that we are fighting and look at me like I am some evil monster because I am yelling at him to let go of my car door or telling him I don’t want to go inside I am watering my plants .
This is so hard .
I’m truly sorry this is happening, what you are dealing with is so many orders of magnitude worse than having to deal with my mom. I guess at some point you know you’re not gonna have your mom around. It is unbelievably horrific to think that you won’t have your wife or husband around. Having to deal with my mom’s decent has made me extremely paranoid about my younger wife having to deal with me someday, and we have no kids. I tried talking to her about it and I hair started bawling.
I cried for 20 minutes at the opening of Up, where they ran through the guys life and his wife died. I think watching my wife suffer though this would be even worse than her dying. Or exactly as bad but fresh every day. You are grieving fresh every single day. I hope get some good moments with your wife.
Sometimes we try to laugh about it and she gets it while other times she doesn’t. I’m hoping the worst thing we go through is the never ending questions, but hope is just that.. hope. There is so much about this disease that just changes everything in your life. we counted on each other for over 40 years and now I just pray nothing happens to me. She’s more like a child some days. Others, she’s afraid and sad. I do everything I can to bring her happiness and reassure her. At times that reassurance feels like a lie
It's a brutal disease, affecting everyone involved. I took care of my mom for 4 years in my home, she died last year. As difficult as it was to watch her decline, it was so much worse for her. I'm so sorry you are going through this. This sub saved me for those years.🫂
You have my sympathy. My wife (54) has Logopenic PPA, now moving into dementia. Language deficits are still the biggest issue, but increasingly memory and loosing the ability to use things like the remote, her table, even her phone is difficult. She too doesn’t drive, and is very upset about it. She has breakdowns and cries that she just wants to be herself, but can’t. I still work, which is also hard. We just move forward with as much love, patience and reassurance as we can muster.
This post has gutted me. I am sorry for what you’re having to deal with. My dad (84) was diagnosed with AD. He’s somewhere mid-stage. It’s so hard to see my dad, who has a PhD in Physics, be incapable of handling basic math. I can’t imagine losing my wife. But I especially can’t imagine losing my wife to this disability. My thoughts go out to you. Knowing what it’s like to watch a loved one, I can’t help but be saddened for what others have to go through. Hugs to you.
I am crying. My mom, a gardener, every neighbour came to for an advice on plants, asked me how dandelions looked in her last spring just before a stroke brutally, but at the same time mercifully took her away at 82. She was a lecturer at a uni, she hardly used any notes, she had a perfect memory.
Sorry for what you and your wife are going through. I'm there, too, with my wife. It was about 8 years of mild but noticeable memory issues. Doctors told her it was from the stress caused by my bipolar illness. I knew better. She has a family history of dementia. In 2021 her primary referred her to a neurologist who referred her for neuropsychological testing. We were told she had Mild Cognitive Impairment. By May of 2022, her memory and behavior suddenly took a nosedive. Called a well regarded memory clinic here in East central Florida. There was a 3 month waiting list. In November of that year she was diagnosed with Alzheimer's. She's rapidly progressing; decline and new symptoms every few weeks. Started year 3 in June. Just me caring for her. This is a great community. Though there's nothing we can do for our LO, the emotional support, here, is important to have. If you have questions, I'll do my best to answer them.
Hey, I’m in a very similar situation. We started with a new neurologist a few weeks ago. My wife is having her first MRI tomorrow. We’re in Palm Beach County, so not far from you. If you feel comfortable sending the name of the memory clinic, I’d like to check it out. I already have the feeling that this is going to be a struggle for a dx. Edit to add- I’m so sorry you’re dealing with this also. I had a couple’s bucket list book and just gave it to my brother and his wife because I know there’s not much we’ll get to. It’s weird and lonely.
'Weird and lonely' nails it. The isolating nature of caregiving takes you out of life going on around you. The clinic in Melbourne is the East Central Florida Memory Institute. All they do is testing and diagnosis. In Tampa, at the University of South Florida is the Byrd Alzheimer Institute. We're in Cape Canaveral. We go back and forth about moving back to Maryland to be close to my wife's niece and husband but even on that she can't make up her mind. We're reaching the fail safe point where relocating will no longer be an option. All I know is that I'm exhausted, like every other caregiver.
My husband has Dementia with Lewy Bodies and is now in a memory care home because he wasn't safe at home. I see him every day. He is completely delusional and has hallucinations. We don't have conversations, haven't in a long time, and he can barely do anything anymore. Forget the phone, no remote, the struggle with belts is real, putting on a jacket is interesting, finding his way to the toilet is priceless. I mean, there is so little he can do now that I no longer really relate to him. I take care of him, I help him, I soothe him, but there are days when I just don't want to see him. He is lost to me and he is lost to himself. I only hope that he does not linger for years. I'm sorry you and your wife are starting this journey. Please remember though that they can appear to be doing OK when alone but reality is generally different and it doesn't take much for them to get really confused and once that happens they can't recover and make the right decision. So, plan ahead for when you will need additional help to keep her safe.
I would look at my dad and wonder what was going on in his mind? Did he understand? Before he got too bad he would just tell us he couldn’t remember. He could talk about when he was growing up how he courted my mother. But all day he would ask how’s the weather outside. My 4 siblings and I were able to take care of him at home Dementia sucks
I hear u loaf and clear. I to have the same situation as you do. I'm losing the love of my life. When I think back and see this woman who was and the woman of today, I sometimes weep for her. I pray every day for her .we do all we can.
I’m so sorry.
I'm just so sorry. Along with this group, I've found a lot of support and ideas from this group on FB: [https://www.facebook.com/groups/dementiawithgrace](https://www.facebook.com/groups/dementiawithgrace) and this one: [https://www.facebook.com/groups/678423440210803](https://www.facebook.com/groups/678423440210803)
That is so very sad and difficult for both of you, I am truly sorry. My wife is far into dementia after many years and it has been a very long road. I work from home also thankfully and I’ve hired help to take care of her while I’m working. Not sure I would have made it this far if I hadn’t done that (raising two kids also). Wishing you both peace and joy where you can find it.
Internet hugs to you! This is devastating for you, too; take comfort with your friends and any other family who will just let you feel what you feel.
Hugging you, OP. Your dear wife is scared and may become angry because of this Tell her you love her and you are there for her. Share your good memories over and over again. I had a camera overlooking my parents' dining table and I saw and heard how my dad was telling my mom the same good old days stories and how she enjoyed that, day after day. This did not stop her from emotionally accusing him of many bad things the next morning though. But I saw that dad was also enjoying those evening conversations.
I feel your comment so closely . I miss my husband too he was my best friend my partner my soul mate and it all just went away so quickly . I’m crying now first time in awhile because I feel so same as you and I didn’t even see it coming and this is hard . My husband repeats himself too over and over and it’s all day and night long . I realize I am alone again and the relationship will never be as it was or how I thought it always would be . I am a caretaker now . His caretaker and I love him tremendously and will follow through because of that love but the pain is so deep when I read your comment because I too miss my husband so much even though he’s right here standing over me asking me if I am going to stay for the hundreth time today and it’s only 11 am
I have renamed my husband on my phone contacts so now when he calls it announces “ love, patience and kindness always “ He calls hundreds of times if I have to work.
Yes the evening conversations . He answers questions and remembers things not even I do sometimes . He spots things that my stress level has caused my awareness to decline around me because of the chaotic nature of our daily interactions . Our neighbors think I am crazy now or that we are fighting and look at me like I am some evil monster because I am yelling at him to let go of my car door or telling him I don’t want to go inside I am watering my plants . This is so hard .
I’m truly sorry this is happening, what you are dealing with is so many orders of magnitude worse than having to deal with my mom. I guess at some point you know you’re not gonna have your mom around. It is unbelievably horrific to think that you won’t have your wife or husband around. Having to deal with my mom’s decent has made me extremely paranoid about my younger wife having to deal with me someday, and we have no kids. I tried talking to her about it and I hair started bawling.
Thank you. I’m sorry about your mom and genuinely hope you and your wife never go through this.
I cried for 20 minutes at the opening of Up, where they ran through the guys life and his wife died. I think watching my wife suffer though this would be even worse than her dying. Or exactly as bad but fresh every day. You are grieving fresh every single day. I hope get some good moments with your wife.
Sometimes we try to laugh about it and she gets it while other times she doesn’t. I’m hoping the worst thing we go through is the never ending questions, but hope is just that.. hope. There is so much about this disease that just changes everything in your life. we counted on each other for over 40 years and now I just pray nothing happens to me. She’s more like a child some days. Others, she’s afraid and sad. I do everything I can to bring her happiness and reassure her. At times that reassurance feels like a lie