I'm finding that it is getting harder to bring up the good memories we made before he was dx. With all the nasty ones happening over the last eight years or so I have to really search my mind to bring back a good ones. Is this a normal reaction for a caregiver or us it just me?
If it is just a for now thing will they come back later?ni tried to look at pictures but ended up crying.
Jazzy-when I was at your stage I wondered the same thing. Of course we all are different-but it took almost four years for me to realize that there really were good times. With that realization came the pain of what will not be. Grandchildren never seen, doing things together, even just unloading groceries together.
Jazzy- I've had the * for about 1 1/2 yrs. now and it is hard to remember who dh "really" was before VaD. I've been scanning pictures into the computer going back to the 1970's when we and our children were young. I see how we were and good memories do return. I usually cry but it is sweet to remember. I completely understand how you are feeling now. Like bluedaze* it is sad that Frank didn't know our first great-granddaughter was on the way when he died. He didn't see our g-daughter get her masters, didn't see his favorite football team win a game they weren't supposed too, etc. etc. I wish I had something to tell you that might help but all I have is understanding thoughts and hugs.
You’ve raised a question I have wondered about a lot – After my husband is dead, will I remember him as he was before he became demented or will my only memories be of him in his present condition?
My husband was always a nice guy and he is even sweeter now that he is so vulnerable, so I won’t have any memories of him as a nasty person. But I’m afraid my only memories of him will be as a demented person.
My father died of Alzheimer’s and I’ve asked my mother this question but she does not give me a straight answer. But since her conversation about my father is always about what he was like after he got Alzheimer’s, I suspect the answer is not a good one. Will this happen to me, too?
Oddly, now that my care for DH has become so hands-on and personal, I get more flashbacks of our happier times together. This might be TMI, but it's kind of cute. While I was placing the urinal for him the other night, I said, "Gee, I haven't seen too much of Charley lately." (Charley was kind of a pet name for his private.) He said, "Farley? Who's Farley?" Then I said really loud, "Charley!!" And he just broke out into the biggish, devilish, boyish grin. It was a fun, humorous moment, and of course, we don't get too many of those anymore.
Maybe I will be able to bring back into my memory, the nice sweet person that I married and not the demented one. My Son and Daughter-in-law were visiting from out west last week- end and they said they were able to see the old Dad every now and then during their visit. I see him every now and then as well but mostly it is the other one. I would just love to be able to bring back the good times once in a while.
Jazzy, your husband and mine have the same diagnosis and it is indeed very hard to get past the bad behavior particularly when we are the victims of their frustrations over the course of several years.
I am writing about earlier, happier times, and although a double edged sword as it brings up all the shattering of the dreams we had, it does help me remember detail. As I write, more detail comes forward in my brain. I sometimes wonder if it is healthy for me to be writing about happier, healthy times but I seem driven to do it so will continue for now.
I wrote for years all the changes and about our life together as this disease progressed. It helped me to be objective when I had to give info to Dr.s Maybe it will help me to write about our former life.
Wish we had a 'like' Jazzy cause I would 'like' your last post. We each have to do what helps us best get through this. If writing about the good times helps get through the bad times then do it. If writing or thinking about them makes it just too painful right now, then don't. We each have to make the choice - it is good to hear how it has worked for others to know either way is fine.
I also struggle with trying to remember what my DH was like. And when I do, I wish he could be like that again. It seems like the dementia has heightened his bad qualities and made the good ones disappear. It's hard to love a person I don't like and sometimes I don't even want to live with him any more. He has become so controlling about the smallest things--wants the windows all shut, even when it's 80 degrees in the house, wants to take a walk whenever he likes (can't let him go alone anymore), so self-centered it makes me want to scream. And I feel like I absolutely have no empathy or compassion for him anymore -- just really burned out today. Sure wish I could turn back the clock!
Elaine - I think it is resentment I feel towards my husband. He gets to sit there and nap when he wants, do nothing while I have all the responsibility for both of us.
Very true Charlotte! I feel lots of resentment and lots of burn out. Even though he goes to day program five days a week, the weekends are still hard for me. Plus when I think about the past and the little things he could have done for me, compliments or a helping hand at times which were very seldom given or done, then I get very mad and sad that what I wanted the most never materialized. It's hard to put the past to the side and deal with the present.
I have had to hang up on him again today. Then he sent me a voice mail saying how childish I am.
He has decided that he has the right to do whatever I can do because I am as sick as he is. I told him that I had told the lady at the parking ticket office that the machine in front of his LTC was not working. He says I told him that I had yelled at her and told her off. That didn't happen. He has told me that since I can take care of myself and all that entails that can take care of him and it can only take care of some things. I don't know what.
I just have to not get into conversations like this with him, but it is very hard to not defend myself or try to reason with him. I just haven't learned to do that yet. He puts on a good front. It's like he has nothing wrong with him then off he goes on me.
I really resent him now and I don't think I like him anymore. He is after me to build a life but wants to control it. I don't have my bed made, my meals made and lots of people to talk to or entertainment twice a day. If I feel sick or get hurt there is no one to take care of me, but he complains about how good I have it. Entertainment to me is watching tv as I don't have money to go to a concert or movie. He ticks me off!!
We have realized that he is resentful and jealous of me so he says I gave dementia as well. He hates my living in our house and making all the decisions about my life. I can't take the abuse and twisting of all the things I tell him. I even hate to tell him about anything good that is happening for me as he resents me even more. I never realized that this happens with this disease. I just can't have him here because if he gets nasty, what will I do? If he leaves the LTC and thinks he is moving back here he is sadly mistaken. That's when I go to my lawyer and get a re straining order and a legal separation.
He had a good laugh about his being in a nasty mean mood with the staff on the week end because he was mad at me when I hung up on him.
This is not how it is supposed to be!! My heart is breaking!!
Jazzy, this is how it is supposed to be, with dementia. Your dh has a brain that is damaged, he is terminally ill and he cannot function as a normal person so please stop trying to reason with him or expect a normal response from him, you will destroy yourself in the process. We all know how heartbreaking it is to have the one we love treat us with such cruelty and indifference but it is not in their power to do otherwise. That is the dementia. The hurt is unbearable at times, I know but what choice do you have? You must just accept the things that you cannot change or you will not survive.
I know your right, but it is so hard to see the dementia and not my loving caring partner of a few years ago. He still looks the same and sometimes sounds the same , but then he is gone in an instant.
I can no longer share my life with him. I can't look for answers from him anymore or turn to him when I don't know what to do, but I just don't know how to shut him out of my life and not include him in it.
I just hate this terrible disease. It is destroying everything that I hold dear.
Cassie is correct. You are dealing with the disease and not the person. I know I still slip,up sometimes and try to reason with him or get him to understand something. I realize it is just wasted energy on my part that could be better used for something else. The best way to shut him out of your life at least while he is placed it to get on with your life. Try to do one thing a day just for yourself. I look at his visits now as a part time job that I have to do several times a week. This has helped me to put the visits more into perspective and it has helped me to stop ruminating on his situation. My husband can no longer use a phone . At first I was calling him on the days I did not visit but I have stopped because he just rambles on and is not productive for either one of us. You can and will get through this.
Jazzy, it is somewhat similar with my wife, though your husband sounds worse. She complains that no one tells her anything. Often we don't tell her things because we never know her reaction. Her sister wrote to her on Thursday that it a nice sunny day. That resulted in a number of rants by my wife about how she can't enjoy the nice weather (she was recovering from a cold). Everyone knows that you never know how she will react to anything. So we don't tell her and then get complaints that no one tells her anything. Of course some times she isn't paying attention or forgets when she is told.
So we don't tell her anything unless we expect a positive reaction. If she asks if I did "so and so" I will often say whatever will get her to stop asking me the question unless I think there is a danger that she will find out that what I told her wasn't correct. For example, when she asks if I or my son are wearing short pants I should just say "yes" rather than the truth. If I say no she will spend much of the day saying that I should be wearing short pants. Of course she complains about other residents not wearing short pants when she feels it is hot outside.
That's it!! You never know how they will react to what you tell them. This morning I called to say good morning and I was up beat and tried not to react to how he spoke to me. I think he now considers our relationship as toxic. I have tried to call the LTC to get some help but no one is returning my calls. I'm not sure if they are busy or if they are getting fed up with all the problems I'm having with him.
I think I am just going to let him do what ever he wants to do or where he wants to go as I have no right to stop him and they don't either. If he gets lost, they will have to call the police to find him. Maybe then there will be some control. Until then I am going to have to not get involved in conversations that can get escalated in anyway. He tried to get one going this morning but I wouldn't bite and he finally gave up but sent me a saying about toxic relations ships and how to deal with them and what you have a right to do to deal with them. I just give up. He will do what he wants.
Jazzy ......Don't forget the good memories. Hang onto them for dear life. That's all you have right now. Get out the old photos, movies or whatever. Write stories. Make a slide show on your computer. Relive the good times.........That's what I did.............still doing it...........GeorgieBoy
With a spouse who has FTD, you are in a much different place than most of us. I have never been in your situation but I have been in some bad places during my life, and at those times I have gone into what I call “survival mode.” We are all born with a survival instinct but we do not often have to put it into high gear. It sounds like you may have to do so now.
The situation you describe sounds like psychological or emotional abuse. Victims of this kind of abuse are often taught strategies for dealing with it. If you don’t know of any strategies, it might be helpful to meet with a professional to learn some of them.
In the meantime, try to stay out of the line of fire. Refusing to allow him to return to your house is a smart thing to do. Another thing you could do is to limit the information you give him, since he has used it against you. Cassie, LFL, CO2 and paulc all have good suggestions. As CO2 says, you can look at it like part-time job.
Since your primary goal is protecting yourself, I would not ruminate about happy times in the past or dwell on what a loving person he used to be, or dig out old photos and memories. That would just weaken your resolve and distract you from your primary job of physically and emotionally surviving this ordeal.
None of this is meant to disparage your husband. His behavior is caused by a degenerative brain disease that is, unfortunately, affecting a particular part of his brain. But just because his behavior is not his fault does not mean that you do not have to protect yourself from it.
To give an idea of how unaware my wife is of the stress she causes me, the other day she was complaining that friend D was texting her too much when she was trying to do something. Or how G at her ALF never lets her get a word in. Or how H stresses her out. These are all behaviors she shows to me but she is unable to consider the affect her behavior has on me or our son.
I'm beginning to realize that the mixture of VD and bvFronto are a deadly one. The effects on the brain causes all these mixtures of symptoms and behaviours that are so very difficult for the LO's to handle. I know he has no I site into his disease and that he can't control his behaviours but it is very difficult to not respond to his cruel behaviour. I feel so bad when I hang up on him and then I find out he has taken his frustration on others or that he is hurt and can't sleep. These are things he tells me have happened after I hang up but are they really happening? He has no perception so I never know.
I have decided to not discuss any if the things I have been asking him for help or advise. I am going to try very hard to just say " I don't want to discuss this at this time" and move to another subject. I just hope it works for me and for him.
He is on Celexa in the morning. The highest dose. At night he takes 1.12 of trazadone and he has Ativan twice a day and can ask if he needs more.
It's just all about me. I don't have what he has and he is jealous and resents me for that. He also is still in the " I want to control you" mode. Hopefully that will change soon. I just need to ignore what he says. I did very well diverting him today so no yelling.
Jazzy, I really don't mean to be offensive but how can a man with ftd be in control of his medication? How would he know of he needed more ativan? No wonder you are at a loss as to how to interact with him if the NH are allowing him to make those choices and seem to be treating him as someone without dementia. He must still present as a very well balanced person. For your sake though, don't forget that he isn't and keep using the methods that you mentioned above. My DH went up to 60MG of an SSRI, (Lexapro same asCelexa ) daily before his anxiety,anger and ocd were lessened.
He does present as a well balanced person except if you cross him or if things don't go his way. Memory is getting worse, but he is allowed to go walking out in the neighbourhood on his own. He just will not follow the rules. I have decided to stop trying to control the situation because if he gets lost it will be on them. There is a human rights law in Ontario that prevents me or the LTC from stopping him from doing these things until he is declared incapacitated, then we can take control. He is very determined to have his way no matter what.
Our daughter tried to call him to arrange a visit and to take him to get his glasses. He wouldn't answer the phone. I called and he answered. When I told him she was trying to get him on the phone , he said" I don't want to talk to her or gave her visit, she can leave me alone". I finally convinced him to call he and really wasn't very nice and tried everything he could to have her not come so he can take a taxi to get his glasses. He is insistent on going on his own. These taxi's will be charged to me and I can't afford to have him running all over the place and charging it to me. I guess I will just have to go and insist on taking him myself. It's cheaper for me to go there then to pay taxi's he is right out if control. Out daughter lives right there and he is just not able to reason these things out anymore. Stubborn and going to do it his way.
It sounds like your husband is able to reason these things out just fine. He’s got you exactly where he wants you.
Isn’t there some kind of a resource available to advise caregivers of FTD patients about how best to deal with this kind of manipulative behavior? I am thinking of some kind of professional who has expertise in this area but I suppose even an FTD support group might have some suggestions. Is there one in your area? I can’t believe that you have to go it alone.
A young man from our church mows our yard and does repairs as needed. My DH has always dearly loved him and his precious family. Sometimes when he mows, he brings his 9 year old son, who has such innocent love for my DH. The last time he mowed, my DH told him, in front of the little boy, to "Get the H*** out and take his G** D*** kid with him. As you can imagine, the little boy was visibly shaken and scared. They went out the patio door and walked around the house to their truck. I went out the front door to the driveway and tried to explain to this little boy that the man he calls Pa is sick. He was trembling but he looked up in my face and said, "Ma, I'm gonna Pray for Pa". This little boy has already forgiven and is trying to understand but I fear he will never forget. I don't know what words to say him. Maybe he's too young to understand but I do so hate for him to have such a terrifying memory.
I called the FTD support and they sent me to a group in the city that us about an hour and a half away. I went but there were no ?FTD caregivers at this group . The facilitator had no idea about the problems faced by an FTD caregiver. They said they know the are supposed to be the support for us but have never had anyone with FTD come before and said she gas no training for FTD just EOSD. I never went back. The Alzheimer's society's mainly work with AD and the support group I was going to are just lost when I talk and the facilitators are always reminding them that I am not in the Sam category that they are. All if them have AD or aphasia. I guess I am on my own until Alzheimer's society becomes The Dementia Society and work with all the Dementia's not just one. That will likely never happen.
My DH loves children and pets. Very different then most.
Hey Jazzy, it might be worth it to try the FTD Support Forum and contacting the Association for Frontal Temporal Dementia (AFTD) if you haven't already. I am a member, although I don't visit their website often, but I have signed up with them to connect with caregivers in my area through email. They are very good about connecting us when there's a new member. Also there's a guy who has FTD who writes a blog about what it's like living with FTD. He is quite functional and it might be helpful to see the disease and the experiences through his eyes...could be similar to what Kevan's feeling. His name is Howard Glick and I think his blog is earlydementiasupport.blogspot.com. It's worth a try.
To be honest I am very, very perplexed about the facility and care that Kevan's in and getting. If he has dementia, particularly FTD then why are they allowing him to make ANY decisions and walk alone outside of the facility? As you know reasoning and executive function are the first to go. I would think that anyone with any type of dementia (not MCI) would be considered "incapacitated" due to the nature of the disease. Boggles my mind.
It's against our provincial human right law to stop him until he is declared incapacitated by a Doctor. I have contacted the FTD support and as I said they referred me to support group that didn't have any idea about FTD. I know about Howard Glick, read all his blogs. We live in Canada and laws a are different here.
In B.C., to declare a person incompetent requires two doctors' examinations and their written reports. One of the doctors should be a specialist, such as a gerentologist. This is done when person is incapable of making rational decisions that are in his best interests. (Even a patient who is a skilled manipulator can be detected by these exams.) If you are concerned about your husband's safety, maybe this would help. It would mean that those who are responsible, such as the nursing staff and you, can be in charge of ensuring your husband is safe.
One of the most difficult turns in the FTD road for me was resigning myself to the fact that my husband could no longer reason, and that there was no chance of remission or recovery. Every once in a while there were lucid moments, but that's all they were: moments.
He either was not able or chose not to share the why's of his feelings with me. I am sure he was angry with me because he had this terrible disease. He was angry because it took everything and that anger was projected onto me.
Once when I visited him at rehab I brought along photos of far better times. I was advised to do this and it was a disaster. Just getting those photos together wasn't good for me either, but I was trying to be spouse, advocate, and psychologist all rolled in together.
For me, the impact of memories have changed over the years. It's not a linear change; it's more like the tide going in and out. There are triggers for me (this time of year is one) and the list of those triggers can be long. But the good memories do surface. Just today when talking with a neighbor I remembered and shared a very wonderful thing my husband had done for me.
Time has tempered a lot of my thoughts and feelings. At least this is true some of the time. At least that is what is true for me today.
Kevan has now decided to not allow me to know what he and his Dr. Talk about. He says "if I can't go to your Dr. And hear what you talk to her about , then you can't hear what we talk about. This way it is even". I used his fear of spending money to keep him from taking taxi's all over the city. I just reminded him that the money he uses for taxi's comes out of the money I need to keep me going. He is also not pushing me to go out to concerts and movies. He was saying he attends all the activities and concerts at the residence. I reminded him that it does not cost us extra for those activities but concerts for me start at $75.00 and up. He let that one go as well. He is refusing to answer the phone now as he does not want to talk to his children. He feels they are not doing enough to help me so out they go. The ward nurse asked the social worker to visit him and he threw him out of his room. He says he is and idiot. This man is very nice and kind. He is not yelling and screaming at the staff but at me and the family. Lots of different changes. I will no longer tell him about things that need to be done to the house or my Dr. Appointments. No more sharing my life with him. No more turning to him for advise or comfort. My partner is gone.
My DH died last year the end of June. Until the last couple of months - I was still remembering him as when he was sick. The last couple of months I am remembering him how he was before he was dx and all the fun we had. It has been harder these last couple of months than the months right after he died. I can't look at a picture or even think about him without crying. I miss him so much. So those good memories will come back. I am just looking forward to the stage where the good memories will make me smile instead of cry. :)