Thank you Elaine and Coco ♥ Our evening have been very pleasant and I am now sure he isn't suffering for the change. God help them all if I feel it starts too! <Momma Bear roar> I will go in tomorrow for lunch too, just to make sure he isn't sad not eating in the sunroom. Perhaps if it is nice we will eat outside in the sunshine ♥

I think your assessment of having the family help with the feeding is correct nikki. its nice to hear he hasn't suffered any loss with the change. I think they tend to adjust pretty well in this late stage. unaware and blissfully happy. its a good thing. keep up the good work.
divvi

Nikki--maybe it's a good thing for you to have some free time during the day. I say this with love--perhaps it will make things easier later on.

Today I had a strange experience that made me think. I was on my walk coming back where I climb 37 stairs to get back up to my court. That walkway is near the end of this particular route and as I came up to it because I've just started a month ago and am just gradually getting back any kind physical power - I reminded myself to charge the stairs because three houses later I end up panting going into my front door; but, that's the end of that walk.

It struck me like a lightning bolt how many layers of meaning were in that moment.

I knew why I was out. I knew where I was. I knew where I was going. I knew I was tired. I knew the stairs were a challenge. I thought about it and made a decision forecasting ahead.

I knew what I'd been doing. I was assessing how much my own body wanted to. I realized I've graduated to step two which is I'm no longer concerned about over extending because this is walk 13 and my body now moves on it's own and I get to look around.

I can remember the first few walks this year. The different aches. Worry about over extending. Do absolutely zero for six months and then go power walking. I remember how long it took me to get going last year after missing three years where I did zero physically.

I am SO NOT talking about me and my walking. I'm talking about the dozens of layers and levels and connections of meaning that just this one thing has and the hundreds of nuances each single moment and each implication has in just this one thing - this walk now.

In a millisecond I swept through the acknowledgement that this is what they lose synapse by synapse until they can't grasp that clocks have arms or what their spouse's name is - nevermind the dozens of possible ripples every word, every name, every action, and every thought has with so many other inter connected things such that our mind scans thousands of them in milliseconds where the stair recalls the moment which recalls the child and why it reminded you and that you could call them and all that in a back thought where your real focus wasn't even paying attention to that but you understood and it all just took a second while you were doing something else.

There was a book written some time ago about AD. Alice was in the title. Well written book. It seemed to me it was mainly about the experiences within the disease. The personal experience of it. That is the overwhelming topic of this board which makes sense.

In my first post in 2010, I wrote about the survival of the spouse - the Alzheimer's Survivor. It is what I am studying the way a patient studies being a doctor. I'm inside the clinical state. If we place our spouse we branch off onto a different road where we meet again arguably when our spouse is free of this disease with everyone else.

Within that branch where our spouse is physically somewhere else and we are physically 'alone' when we are not there with them, we enter a hybrid state the others don't. We definitely face time alone. We may start grieving. We may experience shock. We may get clinical depression. We begin to react to some of this with time available.

I'm in the part I name 'relearning to want it'. There are numerous identifiable phases many of which overlap or recur that I can argue exist; the first of which I would argue is shock. My concern isn't identifying a pattern, being convinced each experience is very personalized partially because of the extent of the power of these massive experiences. It gets below and within our normal concious defence lines and so requires other means.

This is more like teaching an autistic child where even with a fully alert child, discussion will only get you so far. Like teaching a child with a life jacket on to jump off the end of the dock into the lake. You are helping to overcome fear with some safety provisions but that's not what you're truly doing.

You're trying to teach them the joy you know they will have jumping in the rest of their lives once you get them over their fear.

In this case it is bringing a damaged soul back to wanting to feel joy (satisfaction, contentment, interest, pick your flavour). And the trick about that is the balance of keeping the child thinking they might jump in and not make them run away screaming.

No doubt in my mind either Wolf. Working our way through the grief is hard work, working our way back to happiness is a conscious effort. For example, me getting a plant, such a simple thing to some, but you all here understood the deeper significance. The first time I went to a restaurant alone, that took some courage for me. Happiness isn't a guarantee, you have to both work for it and want it.

As I said in another thread recently "Know what I miss?"

"Without a doubt we do have to want to "feel" better and we have to work our way towards our goal. Like most things that are worthwhile, it takes a lot of work. I guess we each need to decide if we are worth the effort.

I decided I was."

Julia I am so happy that you are having moments of joy. You are such a special sweet person, and you deserve the best. God bless you dear one.

Wolf and Nikki very profound conversation, and it just seems I go to tears so easily this past couple of days. I went off the antidepressant about 2 weeks ago, with minimal side effects. Now, I am "feeling" things again, and it is ok. I only took the meds as at the time when Dado was in hospital, I had pneumonia, family was horrendous, paperwork and finances over the top, and my heart was just crushed. Now that I am rested up, I want to be totally myself again, the meds did help for that time, but I do not want to stay on them.

So..I do feel more, and I can handle it. Us guys on this thread, we are needing to live in the moment, as to face what is to come is too much. We know because we see what all the others with the stars by their names go through, and , we just know. Truly each one of us on this site have this to face, and we, here, will have it sooner. Surely I can see that there is a difference in "length of time" that we have watched our spouses illness, and for us, it has been so so fast, it is very surreal. I love my Dado very much, and it hurts, yet, for those of you that have been together many years, it must even be tougher. I don't know, I don't want to hurt and hurt and hurt.

And if he keeps going like this, just zombie like and barely knowing anything, I think I do want him to not suffer too much longer.

Oh...it is so sad.

Julia, fantastic!! So very glad to hear you are taking the chance, the risk. Good for you! I hope you have a wonderful time and meet some new friends too :)

Coco, how very strong you sound!! It should hurt, let yourself experience the pain. It is clear you are working your way through it, and doing it beautifully ♥

"I can handle it" .... Awesome! And remember Coco, Dado would not want you to hurt and hurt and hurt. ((Hugs))

Marilyn, thanks for thinking of me. I wouldn't be able to do anything of this sort yet due to the mass and health issues. I have however been exercising within my limits for a few months now. I had to have both shoulders reconstructed and needed neck surgery as well. These areas are of course weakened and caused my recovery last surgery to be brutal. I am working at regaining strength in the hopes of avoiding at least part of the post op trauma.

Surgery is the 24th. I am officially nervous. Not afraid, just a healthy nervous.

My Mom's surgery 2 weeks later however has me very afraid. But, attitudes are positive and hope remains high.

Just recently found this website and I've been reading the massive amount of comments - what a great, supportive community. I've been learning as much as I can in preparation but I don't think I'll ever really be prepared. Only a week ago I started laying out my DH's clothes for him so he doesn't put the same clothes on he wore the day before. I don't know if I'll ever get used to taking care of my DH in this way. It's heartbreaking, to say the least. He is in his early 70's and has Parkinson's related dementia. He was diagnosed with Parkinson's about 20 years ago. He had a procedure for the Parkinson's which was a miracle. It relieved him of all the outward symptoms and allowed him to lead a normal life without the use of drugs for 20 years. He still has Parkinson's and the outward symptoms are slowly returning but not a big issue. Now we are dealing with the dementia which I have done my best to deny until about 3 years ago. I'm glad I found this place to vent and help me get through this chapter in our lives. Thank you all !!

It is very painful and cuts us deeply; but, these boards are full of these stories although I agree it might be hard to find those specifically.

It takes a huge shift in our thinking, and I suspect more with women who invested in the traditional roles, that our spouse is changing in such fundamental ways that it seems they are becoming a different person.

We have to step back and realize that some time in the future society itself will agree to declare them incompetent to function as normal human beings. The final destruction of ourselves is when our society doesn't allow us to make our own decisions.

I think one of the hardest and most deeply painful parts of this disease is when their behaviors start changing because of the steady loss of their functioning mind and we are faced with trying to take in the extent of the horror in front of us.

I believe your husband may be trying to take charge of himself in a nightmare of losing multiple things that defined him. The fact that he's keeping his wedding ring on while demanding you take your's off helps show this.

The tremendous hurt comes from not having taken on what is happening in the sense that we still look to our partner as what they were but sick with something. No. The disease has done a lot of damage already none of which is visible except in the changes in their behavior. I couldn't guess who this disease is hurting more right now. The terrified person inside who knows things are disappearing but is insufficiently harmed yet not to try to do something about it. Or the partner who sensibilities are being kicked hard by what they're watching in someone they haven't had time or experience to accept is now steadily changing through no fault of anyone.

You will eventually need to take legal steps both in your own situation and in the fact that with dementia it unfortunately only travels one way unless it is caused by a fixable condition like perhaps a new heart.

Later in our journey we become so shellshocked by the constant barrage we become numb inside by necessity.

I'm very sorry Jazzy. It's the disease. And with Alzheimer's it's a matter of time before all decisions will rest with you.

Thanks for your wise talk, Wolf. I have enduring power of attorney but this human rights act allows him to still make his own decisions until they declare him incompetent and right now they don't think that is necessary.
I know it is the disease but it sure is hard. I wish I could just put a big thick wall around my heart until this is over, but that is not possible.
I will just have to wait and find out how this is going to work out. Maybe it is the best for him and maybe even for me in the long run. Time will tell. This bv Varient FTD really messes with their mind. They become so self absorbed and arrogant and controlling that is makes it hard to care for them. So far the aggression has quieted down hopefully for good, my dream anyway.

Thanks hugs

jazzy

Jazzy, it hurts deeply and I am so sorry. Though I can't recall anyone's spouse wanting to be in assisted care, but as Wolf said this board is full of the heartaches that come with losing the love of your life to these horrendous diseases. The battles will be different for each of us, but we are all in the same damn war.

I suspect Wolf is right and the poor man is struggling with losing his mind, I can't imagine the hell they must be in. I would guess he sees this as one way of gaining some control in a world gone mad.

I am sorry but I can't remember how far along he is the disease, nor if you were already considering placement. For many a structured environment is important and many do crave much more stimulation. Yes, we do know it is the disease, but you are right it does still hurt greatly.

I think it might be helpful to read through some of the older posts where acceptance and adjustments are talked about. I could never "emotionally divorce" or build those wall so many talk about. More important I believe is to mourn the losses as they come and truly come to know the spouse you married is gone, nothing will ever be the same again. The earlier stages are so difficult because it is within us to try and want to fight this beast that is claiming our spouse. We try to desperately cling to who they were, who we were together. This only causes us to hurt more. With the understanding that it just isn't their fault (neither is it ours) comes a gentling of the heart towards our poor spouses.

You understand it is the disease, but I believe you are still in the "fight" process. That is not a dig at you Jazzy, I think we all go through this, I know I certainly did. As had been said here many times, his reasoning button is broken. The sooner you can accept he can't be who he was, that it isn't his fault, that you truly can not help bring him back, the more peace you will find.

It will always hurt...and I am so sorry you are hurting so much right now. ((hugs))

Thanks so much both of you.
DH showed signs of the bv about 7 years ago but wasn't diagnosed until last May. He has often told me he would never go to a nursing home but since he has been there since last Tuesday he has found that is just what he wants. It has lots of activities and music. Yesterday our DD went to take him out for lunch but he refused because they were serving haddock for lunch and so his diviner was taken down to the cafeteria and she bought her lunch there.
Placement was only if I was unable to care for him. Now he has found that he loves the structure and wants that life.
I'm alright with it but it feels bad to know he accepts care from stranger but not from me. He has fired me so many times that it a joke when I go to my group to find out if I have been fired this week.
I will be alright but right now it is still a shock and I will likely be grieving for a time and feeling sorry for myself. You see, when I was born my mother didn't want me but my Dad did, she was 42 and had seven other kids. My Dad died when I was 4 and Mom always threatened to give me to the Children's aid and I don't remember her ever hugging or holding me as a child. so I guess I am looking at this as the same kind of rejection. I survived that and we had a good marriage and life until now. This desease Is awful. Hugs

Your husband isn't in control, the FTD is in control. Keep that in mind. You cannot reason with him, his reasons will not make sense to you. You can't expect him to consider how his behavior affects others. My wife has bvFTD.

With the loss of executive function people with FTD tend to need structure. At least he recognizes that and that it is very difficult for one person to provide the required amount of structure at home.

I know he hasn't presented it to you this way, but you can consider it a gift from him. He will get the care he needs. Your relationship might improve if you are not having to do the daily care for him.

As to him telling you to sell the house and move closer to this home in an apartment. That is your decision to make. Do not let him make this decision for you. If you need to sell the house to pay for his care that is one thing. But I would recommend not selling it for at least a year for the same reason people recommend not making drastic life changes until a year after the death of a spouse. If you go ahead and place him, you can tell him you will sell it after he settles in. Or tell him you did sell it, he will never know (though make sure other visitors understand this fiblet).

When enrolling in an ALF there is usually a community fee, which may or may not be refundable. Most ALFs offer respite care, so you could have him in under respite for some time (maximum time allow for respite varies by facility) before committing for the long term.

I am glad the postings helped you.

DH has been presenting symptoms for about 7 or 8 yrs but was only diagnosed last may. He also has Ad and vascular. He can only stay in respite here in Canada for the 8 days that were available for him but he has five more in Aug , 8 in Sept and 8 in Nov. his Case worker says it can anywhere from one to six months for him to get a permanent bed. Until then I will just be patient and take him out often. I am quite certain that this decision he has made is the right one for both of us but I had a hard time with it until both of you helped me to get it all back into perspective.

Thanks

Hugs

No problem. He has told his caseworker he will wait until he gets a bed at this facility as he loves it there and she has had this situation with another of her clients. He is happy there and I will do what I can to see that that is were he goes.
It's hard enough on them Andy he can go where he chooses while can still choose then that is good for him and his ability to win something for himself.

Can you send that couple to my home to talk with my wife? I am planning of moving her to ALF but she is against the idea.

Well, once again I am fit to be tied. As I mentioned I have been going in to feed Lynn his dinner because they are doing a new feeding program for lunch. Though I did go in a couple times during the day too just to make sure he was alright. I went in on Saturday and Lynn was agitated, he said "get me the hell out of here!" and he refused to eat.

I of course got him out of there. They were packed in there like sardines and Lynn was not the only resident flustered by too many people and too much noise. Needless to say I was pissed! In that rage I told the staff if he loses one single pound I will sue this Fing place. Ahhh, I need to learn to calm my temper before I open my mouth. <grin>

I left messages for both the DON and the manger, neither have called me back. Pfffffft. I called again just a few moments ago and left another message. At any rate, I of course will not let Lynn suffer so I have taken matters in my own hands. I called and told the floor staff that Lynn is NOT to be put in that other dinning room, period.

I will now go in later than usual, and either wait until the sunroom is reopened and feed him his lunch late, or attempt to feed him in his room.

I can't help but shake my head in disbelief and wonder where the hell did common sense go? There are about 50 residents on the floor. Some go to the main dinning room downstairs to eat, most are divided between the two dinning rooms on the floor, and then there are those who eat in their rooms.

This feeding program is being tried on 6 residents. They want the room quiet and for those residents to have a serene eating experience while they implement the program. Well that is just fine and dandy, but what about the other 44 residents!! They are being packed in an already crowded dinning room with no regard for their needs. Ridiculous!

I am on my way in now, and just needed to vent a bit before I implode. Thanks for letting me get that off my chest ♥

OK Nikki - first are you paying for his care because if you are here is what I would do.

I would arrive there while the meal is being given out and I would take my hubby and his meal to the sunroom that he likes and works best for him and have his meal there. What are they going to do throw you out. If they try tell them in a very loud and firm voice "NO".

You or we the taxpayers are paying for his care and they are mandated to give good care. He isn't getting good care if what "they" are doing is causing him to become aggitated and not eating. Then watch how quickly the powers that be get in contact with you. The staff isn't going to argue with you.

Yea I to will be a sh** distruber.

Thankfully, with the help of Hospice and my kids, I was able to keep Claude home until the end.

While we were still living in Oklahoma, and when my SIL passed on, we moved Claude's brother into a nursing home near us. He was on Medicaid. At first, the care the patients received was okay, but as time went on it deteoriated drastically. We used to visit him at least every other day at various times and played dominoes in the lounge. One Sunday, three aides sat in the lounge for over an hour, talking and drinking coffee. A lady in a wheelchair had a very smelly BM and they didn't pay the slightest attention. I found out later there were three aides for 40 patients and no RN OR LPN on duty.

I marched in there the next day and had a talk with the administrator. She was oh so apologetic, said she would take care of it etc. Two Sundays later, the same thing happened. First thing Monday morning, I called his caseworker and explained the situation. She immediately made arrangements to have him transferred to the other nursing home in town and took care of all the details. One of the good things about living in a small town!!

I went and had another chat with the administrator. Asked her if she had heard from the caseworker and she said no. I told her she would and told her we were moving Henry immediately. She told me we couldn't do that without notice, da da da, and was quite nasty about it. His caseworker must have reported the place. Shortly thereafter, it was sold right before it was on the verge of being shut down. The new owners fixed the place up and I understand it was a nice place afterward.

The moral of this story is "the squeaky wheel gets the grease"!!

Thank you all for your posts and support. This facility is the best in our area, or else Lynn wouldn't be there. The level of care is usually excellent. Any issue I have ever had has been addressed and fixed promptly. (with only 1 exception in over 4 years)The reason I didn't get a call back immediately (as per usual) is because they were having a meeting to try to solve the problem.

Without a doubt, the squeaky wheel does get the grease. And the vocal "Momma Bear" wife gets better care for her husband. I have no problem filling that role. He would do no less for me.

They came up with a solution that I think will work out great for all involved. Lynn will get served his lunch a bit later, and that way he will be able to be served in sunroom. The timing doesn't trouble me in the least as this will be the same time he use to eat for the past 3 years.

The pilot program was explained in more detail to me and now I understand better what their goal is. The objective is to implement this feeding program with all the residents eventually, they are testing it on these 6 residents first. It is a good program that prompts more communication among the residents (instead of just blindly opening their mouth for food) and also encourages them to do what they are able to. For instance, Lynn CAN pick up the glass and take a drink, though often he would need prompting. But often in the rush to get everyone fed, they give him his drink. He doesn't mind, but I do believe in letting them do anything they can by themselves.

So a win/win. Whew!

Good for you Nikki...stand up for your man!

DH came home on Wednesday and has tried to push me farther then I want to go. Today is the day he fills out the application for placement. I don't know what is going to happen or how long this will take but it is what he wants.
I think he finds it boring here and he goes back to ADP this afternoon and I know he is now happy about that.
He has tried to be so nice and sweet but I am not to remind him of his Meds or sleep time.
He only slept one of the nine days in respite but he has hit the bed every afternoon since he came home. He informed me that "we" eat our big meal at noon and "we" eat a light meal in the evening. The we is the residence people.
He is very different and the bad dreams are gone but he just wants to go back. I sure hope it works for him. He misses all the people and the activities and " everyone knows me" and " they all think I am handsome and great" and " I am the favourite, I think, you know, the fair haired boy"
I will never understand all the ups and downs of this disease. I have him home but I don't have him home. Anyone understand how I feel? It would be better for me if he were able to be there and I could go and visit. He told me he doesn't want me to come everyday as he will have a life there and so I need to make my own outside of his. Besides I may interfere with one of his activities. I realize he doesn't mean to be hurtful and that is is the disease that makes him think only of himself and his needs but I feel like I have been booted to the curb.
I sure don't feel very wanted or needed right now.
I had two bad sleeps since he is home and one just before so I am back very tired and it is not his bad dreams just a very lost feeling with no idea as to what is going to happen next. I seem to be spinning all over the place at his whim with no control or stability in site for my life. This sure causes a lot of stress.

Hugs

His caseworker was here this morning and he was in fine form. He will be on the waiting list on Monday and then it will be anywhere from 1 to six months. He even told her to leave and he walked out of the meeting three or four times. He told her to just get him a bed there ASAP.
I was supposed to fill out a form about how I am doing and she said she had filled out most of it already because she knows what is happening to me. She says he is very smart and cunning And can be verbally abusive to me but not to anyone else and that is it in a nutshell. No rhyme or reason why just me, that is just how it is now.

Abby, no I didn't know that!! That must have been during one of "my breaks" from the site, how sweet you all are ♥

Lynn was an amazing caregiver! He would go to work every day, take his lunch hour to come home to feed me and give me my medications, then go back to work... then come home every night with a big smile on his face as he faced all the household chores and fixing our dinner. When I would ask him how the hell can you be so damn happy having to take care of me!? He said it was simple, I was his princess and he was treating me a princess should be treated. Still brings tears to my eyes. Talk about not getting what you bargained for, here I was 35 years his junior and yet he was my caregiver! Never once did he complain in all that time. Never once.....I was not nearly as good as he was, though I did try.. and I know that is all he would want from me. ♥