I feel like start running and not look back!

I’m so glad you made the decision to move him into care before things gets worse. Three years of your life dedicated to him seem to me more than enough. It may sound selfish but in my case I don’t think feelings of guilt will be a problem when the time comes, if he lives long enough for the disease to develop to the last stages that is, my worst fear is that we might not have enough money to pay for a place for him to go.
Best wishes to you too!

Were you able to get an appointment with the social worker? I hope so.....

I don't often have time to catch up here, but this thread really spoke to me. My husband is mid stage Frontal Temporal Dementia with severe aphasia. He has declined rapidly in the last 9 mos. - it's shocking. But that's the nature of the early onset FTD. It progresses rapidly but the person is relatively young and healthy. Like Bruce Willis, one of my husbands' favorite actors, actually. I've been taking care of my husband full time for 3 years now, quit my job, quit volunteering, quit seeing my friends for dinner or a movie, quit travelling to spend the weekend with my grandsons. My husband is going to be 66 in 2 weeks, and had the first signs of aphasia 6 years ago. I am sure there were signs before but he was a quirky engineer and always pretty self absorbed, and it was, I now realize, always a "his way or the highway" relationship. So not surprisingly, he is a really tough guy to care for. He's obnoxious, purposefully uncooperative at times when I really need him to cooperate (think airport) and as he gets more confusion he seems to take it out on me. I have two caregivers that assist 5 mornings a week with showering and grooming, he has lost any sense of personal hygiene and refuses my help. So it thought taking this 6'2", 200 pound uncooperative toddler on a cruise would be a great idea. I did include all our grown kids and spouses, and the two grandsons thinking it would be a great family event. Nope. I was just caregiving, arguing, cajoling, worrying, managing him the whole time. I maybe had an hour with the kids in the pool. But my kids validated me - and we had a group text after - that it is time for their Dad to go to memory care so I can be a friend, not wipe his rear and beg him to let me brush his teeth. Being only 5'2" and 100 pounds doesn't help him take me seriously. He has pushed me and slapped my hands away many many times. Anyway the point is...I have been struggling with this for the last 9 mos. and the guilt, but banish the guilt. I have done my absolute best for 3 years and given up everything important to me, other than him. He isn't getting better, and what is the point of waiting until it get worse? Till he wanders off, really hurts me, touches some little kid at the mall? Tonight at dinner at a local Mexica restaurant he took his straw out of his drink and used it like a spoon to eat refried beans. I am not waiting until it's unbearable. I have a life to live, and he will be safe and cared for and have more activities than I provide as I am paying bills and maintaining his life, our home, etc. I am not letting this disease take out 2 people. Guilt has no place here, I've done all I can and he still needs more. Give yourself the same grace, please. I will visit him and enjoy the fun things, we can walk the dog, go to lunch, I can stay for movie night. But then I will go be me, and he will be respected and cared for and safe. It's going to be hard, I have read posts here that are helping me prepare for the inevitable lonely...but I am already lonely; I am just to tired to notice. Best wishes to you - find a way to get past the guilt and salvage one life. You can do it!

Please clarify. What is the role of a social worker? What can they do for a caretaker? I am realizing that I can't do this by myself. I don't ask for love, recognition of being my husband's wife or even appreciation, but I do want him to cooperate ...going to bed for example. I see that the push back is becoming more and more stringent. I get upset and that ruins my night's rest. He doesn't want to take his pills, change into pjs, brush his teeth. Just civilized behavior. He wants to roll into bed with his street clothes on and nothing else done. He was always a strong -willed child, a self- centered man, so this behavior mixed with ALZ should be no surprise. The way he just stands around and watches me get ready for bed with a smirk on his face, leads me to believe that he is being passive/aggressive. Yes, we have a guest room and bath; that may be my next step. 57 years is a long time to share a bed, but the time is coming to make a change. The problem is that he can't do the nighttime routine ..needs assistant to get it figured out, so leaving him on his own won't get the job done.

@billiekip - I am distraught for you & your situation.

To clarify: I am not in a situation as a caregiver; I am the one getting desperate for an expression of care from my partner.

I pay for 99% of everything, b/c I can (& am comfortable with that if this were an emotionally rewarding relationship). Up until 4 years ago, that was not the case: for our first 6 years we "dated", did things together mostly on weekends (we lived 28 miles away fm each other), split everything, etc. but we were not living together then, and both of us were working.

@billiekip - I am distraught for you & your situation.

To clarify: I am not in a situation as a caregiver; I am the one getting desperate for an expression of care from my partner.

I pay for 99% of everything, b/c I can (& am comfortable with that if this were an emotionally rewarding relationship). Up until 4 years ago, that was not the case: for our first 6 years we "dated", did things together mostly on weekends (we lived 28 miles away fm each other), split everything, etc. but we were not living together then, and both of us were working.

Please clarify. What is the role of a social worker? What can they do for a caretaker? I am realizing that I can't do this by myself. I don't ask for love, recognition of being my husband's wife or even appreciation, but I do want him to cooperate ...going to bed for example. I see that the push back is becoming more and more stringent. I get upset and that ruins my night's rest. He doesn't want to take his pills, change into pjs, brush his teeth. Just civilized behavior. He wants to roll into bed with his street clothes on and nothing else done. He was always a strong -willed child, a self- centered man, so this behavior mixed with ALZ should be no surprise. The way he just stands around and watches me get ready for bed with a smirk on his face, leads me to believe that he is being passive/aggressive. Yes, we have a guest room and bath; that may be my next step. 57 years is a long time to share a bed, but the time is coming to make a change. The problem is that he can't do the nighttime routine ..needs assistant to get it figured out, so leaving him on his own won't get the job done.

That’s my concern will there be enough money? Yes! If we sell the house but then where do I live?
I’m angry that I may have to sell the house but he would do it for me. How selfish is that? But I am tired and starting to see more changes.

A friend's husband just died of Parkinson's after 15 months in a nursing home .(Montpelier, VT). She doesn't regret her decision one bit; it kept her sane. She did struggle with guilt when he said he wanted to go home, but she stayed the course and was able to visit him rested and in good spirits leaving the care to the professionals. She is now in the next chapter of being a widow. Yes, she misses him; he was mostly lucid and always knew and loved her, but she knows she did the right thing by placing him in a good facility..for him and for her. These diseases don't just affect the patient. The family is affected too; specifically the spouse. Each one of us has to make a decision. I am leaning toward memory care myself. If my husband's belligerence won't allow me to help him, then I'll have to get someone who can. I will be sad for him, but I will have no guilt.

I don't often have time to catch up here, but this thread really spoke to me. My husband is mid stage Frontal Temporal Dementia with severe aphasia. He has declined rapidly in the last 9 mos. - it's shocking. But that's the nature of the early onset FTD. It progresses rapidly but the person is relatively young and healthy. Like Bruce Willis, one of my husbands' favorite actors, actually. I've been taking care of my husband full time for 3 years now, quit my job, quit volunteering, quit seeing my friends for dinner or a movie, quit travelling to spend the weekend with my grandsons. My husband is going to be 66 in 2 weeks, and had the first signs of aphasia 6 years ago. I am sure there were signs before but he was a quirky engineer and always pretty self absorbed, and it was, I now realize, always a "his way or the highway" relationship. So not surprisingly, he is a really tough guy to care for. He's obnoxious, purposefully uncooperative at times when I really need him to cooperate (think airport) and as he gets more confusion he seems to take it out on me. I have two caregivers that assist 5 mornings a week with showering and grooming, he has lost any sense of personal hygiene and refuses my help. So it thought taking this 6'2", 200 pound uncooperative toddler on a cruise would be a great idea. I did include all our grown kids and spouses, and the two grandsons thinking it would be a great family event. Nope. I was just caregiving, arguing, cajoling, worrying, managing him the whole time. I maybe had an hour with the kids in the pool. But my kids validated me - and we had a group text after - that it is time for their Dad to go to memory care so I can be a friend, not wipe his rear and beg him to let me brush his teeth. Being only 5'2" and 100 pounds doesn't help him take me seriously. He has pushed me and slapped my hands away many many times. Anyway the point is...I have been struggling with this for the last 9 mos. and the guilt, but banish the guilt. I have done my absolute best for 3 years and given up everything important to me, other than him. He isn't getting better, and what is the point of waiting until it get worse? Till he wanders off, really hurts me, touches some little kid at the mall? Tonight at dinner at a local Mexica restaurant he took his straw out of his drink and used it like a spoon to eat refried beans. I am not waiting until it's unbearable. I have a life to live, and he will be safe and cared for and have more activities than I provide as I am paying bills and maintaining his life, our home, etc. I am not letting this disease take out 2 people. Guilt has no place here, I've done all I can and he still needs more. Give yourself the same grace, please. I will visit him and enjoy the fun things, we can walk the dog, go to lunch, I can stay for movie night. But then I will go be me, and he will be respected and cared for and safe. It's going to be hard, I have read posts here that are helping me prepare for the inevitable lonely...but I am already lonely; I am just to tired to notice. Best wishes to you - find a way to get past the guilt and salvage one life. You can do it!