Yesterday my DH had his 1 year assessment. He had the retesting last week and now we have found out that he may not have bV Varient Fronto. If it is there it is very early stage but they think it is the vascular that is causing all the nasty moods and behaviour. I was happy to hear that part but they said he is so intelligent and has so much training in his military career in taking tests and problem solving that it overrides their ability to tell us how advanced he is in the Ad and Vascular. It seems that when they test him he can concentrate so intensely that he can do well on these test but when he is not doing the tests he is back in his AD and Vascular mode and they can then see the symptoms. I am so confused that I just don't know what to think anymore. The farther we get in this disease the more confusing it is. You just can't seem to pin anything down and it is all over the place and different everyday or every hour. He immediately wanted to get rid of the caregivers and Adult day Program but they said no way just keep things where they are as they are.
Jazzy I am glad (for you) that they told your husband that the caregivers and Adult day Program should stay in place. This way he knows that it is not your decision to have these programs in place, it is doctor's orders, and just because he doesn't think he needs them right now doesn't mean that tomorrow (or next week) won't be different. I am as confused as you are right now - for the last week or so, my DH has been really good, and if you were not a member of family, you would think there is nothing wrong with him. I'm beginning to think that perhaps he is feeding off my moods - the weather is better, I can get outside and play in the garden, so I am happier, so less stress.
On aspect of dementia that I find confusing is the role of motivation. Many people with dementia can be motivated to increase cognitive function, such as when seeing a doctor, friends or doing something that they really like. And then they are tired out and worse than usual. I see L at night with terrible symptoms, she gets a call from her father and acts quite well, and as soon as she hangs up is as before the call.
And dementia affects motivation. Things that motivate L decrease over time. We think "well, why can't they motivate themselves to just do X, Y, or Z?" But they can't, the dementia robs them of their motivation. We think that we can fix motivation and get people to do things. Sometimes we can, such as the promise of a favorite food or activity. But often we can't.
This condition is so difficult for the caregiver who sees the best and the worse in their mate. We also have hope that things won't get worse too fast and then the next day it does. One of my major comfort areas was going to the several sites that explain the stages and what to expect. Sometimes I wondered why I would do this so often, but I do think it helped me face the changes and prepare myself for the changes rather then place my hope on any major improvements in his condition. The "Big Tree Murphy" book and site was really helpful. The site is not updated and parts of it no longer exist, however there is enough there that it can be very helpful. Mayo Clinic site on AD is also helpful. The FISHER FOUNDATION site was my favorite and my dh followed the changes like clockwork until he hit the end of stage six and then it was a rapid downhill slide until he passed.
Early on most of us were confused and as time goes on things do level out and these sites can prepare you for what you can expect.
Jazzy, I have often seen people here express that the earlier stages are the hardest on the caregiver. What you are going through now is exactly why that statement is made. I am sorry for your frustration and confusion. Perhaps you could have a sit down alone with the doctor and express how you are feeling? I hope you find some peace and comfort ((hugs))
Thanks for all the advise and comfort. I have been told that the early stage is the hardest for the caregiver as you say Nikki and I believe, I really do. I just get so confused with all the ups and downs. One week he is like he is since yesterday and kind and sweet but last week he was a terror. It depends on what I do or what I say that can set him off. He keeps telling me that I am not saying things right and he gets upset because he says he doesn't understand me anymore. I know and lots of you know that this happens but I have no idea how to change and say things so he can understand. I speak directly to him and slowly so he won't miss anything but it still doesn't come out right in his mind. This only happens with me and no one else. I have no idea why I do this to him. This is really frustrating. I know he has no insight as to his having this disease and that is also a problem as it changes from day to day as to wether he has it or not in his mind. The diagnosis changes everyday. I thought the Dr.s report would help but no way. All care givers off the ship was what I had yesterday until the Dr. Called back and said no. My word or explanations mean nothing as I am not a professional as he says. What a mess!!
I am sorry that you're struggling....this disease is so difficult to grasp and wrap your head around. Just when I think I am learning to get a handle on it...SLAM...out from the ball-park comes that curve ball and then it's back to the bench.
One of the first observations I noticed with this disease was his withdrawal from me along with absolutely no motivation. Previously he was always a self-starter and then quite rapidly he became what I thought was lazy. He would sit and play computer solitaire non-stop for 4-5 hours daily. He had what I called a comfort zone with me...as I would see one side of his behavior his family and doctors saw another. He is still he very clever at times (particularly in the doctor's office) and can give an Oscar winning performance!
Diagnosis changes---I too had a similar experience with the doctors lack of insight into behavioral problems. I understand your frustration and sympathize. Because an early diagnosis is so valuable in financial planning I believe that it's time for you to change medical doctor's or seek a second/third opinion. If I had had an early dx it would have saved me a lot of emotional and financial grief.
You have helped so much lullibird I hear my story in yours and you have reaffirmed the things I live with everyday. I was beginning to think I was imagining things. Yours DH sounds just like mine. Thanks to all of you. I really appreciate all your comments and am learning quite a bit and getting so much support. Thanks again
Sid, Joan's husband is a perfect example of how when they do the testing they can test normal. My husband practices when he is going to see is neurologist and he did better last year. It is the other areas that tell the truth and sounds like the doctor is aware.
My wife just scored 30 on the MMSE, that is a perfect score, a few weeks ago. She never scored a 30 before. This partly reflects that the MMSE is not appropriate for FTD, but also that she has memorized the test and knew what to expect. Her professional background made her familiar with the test.
But she tried to cheat on the empathy test and thought she did well. On this test we saw a major drop and her cheating revealed that she didn't seem to understand the word "empathy." She confused it with "pity."
So glad I could help reaffirm your thoughts. I also needed to add when you decide to obtain a 2nd/3rd opinion on the DX be sure to get your spouse's medical records.
It wasn't until after I read my husband's medical report from a psychologist that I realized how his interview/evaluation was full of confabulations. He is very clever she believed him without checking or interviewing me!!!! The report/interview was full of misleading inaccurate facts which he confabulated to cover his cognitive decline. In her report she stated that he need no further testing!!!!!! It wasn't until 2 years later and another psychologist that the DX was made. GRRRR
They have him diagnosed. I thought they were backtracking last week but they are having trouble putting him in a stage. He is past early but every now and then he goes into some further areas then the next thing we know he is back out with only memory and some behaviour problems then we are back with all the bad behaviour and swearing and yelling at me. Then he is like a little boy. I feel like I am on a roller coaster that never stops. He tried to get out of going to Adult Day Care and having caregivers but the Dr's said noway. Keep the status quo. He was not happy about that. The ADC and caregivers are noticing changes again this week as is his facilitator at Alzheimer's group. I will just have to be careful how I care for him and not do anything to agitate him. This week he has been just great. Even fun to be with sometimes. How long will it last? Who knows. If I am lucky it will last four months again like it did in the fall. No night terrors ,no bad dreams, no cursing and swearing. I'll take what ever I can get.
Jazzy, I really do feel for you! {{hugs}} This is the most confusing illness I've ever seen - I'm dealing with the same roller coaster you are (but without the violence). So I pray for both of us that the good times will last for a little while, and we can enjoy the little bit of fun we get when things are going good.
Yes, the roller coaster ride is the worst.....I get myself strapped in for the daily ride and surprise his behavioral ride isn't too bad then the next day my seat belt is unstrapped and crash.....unexpected unexplained twists turns and nose dives. Always be prepared for the worst case scenario. Carry your keys and cell phone with you at all times. Have an exit strategy no matter how calm things are for the time being.
The stages.....I see my husband overlap the stages and it varies from day to day. It believe mine husband's is between stage 4 and 5, but he's doesn't exhibit any true stage. I believe this is just a guide line for an idea on the stage. Husband's doctor has never staged him as he has FTD/ alzheimers . I am only making an educated guess from my daily observations.
I am glad to hear that you have some fun days with him! I wish you a Happy Mother's Day Jazzy
Jazzy, I'd like to add a comment about the agitation you are seeing. A few weeks ago, my DH started getting agitated - a little in the evenings as well as daycare after lunchtime, so my response was to just pick him up earlier in the day. Before I knew it, he choked a guy at the daycare who would not let him leave the premises. We were subsequently 'kicked out' of daycare and could not go back until he'd been through a Geri psych evaluation.
I keep thinking if I'd gotten to the Dr and gotten meds to address the agitation earlier, we would have been able to keep him in daycare. Hindsight, you know!
DH hasn't done the hands on thing yet but has yelled and screamed at cashiers and waitresses and I have had to step in just the night before last as he was about to loss it on a nasty cashier who didn't know her job. My son has noticed that it is me he takes all this out on and is so nice to others . He can be screaming at me or pouting in his room when one of the kids come tot he door and it is just was awesome to watch the change from bad boy to good boy while they are there then back the reverse when they leave. It is better now since they raised the Trazadone a few months ago. Right now he is tearing out the carpets in the house as there is hardwood under and I am having them refinished. If I go to pull out a staple or move a board out of the way he says" no no don't do that, I will do it " he then runs from job to job to make sure I don't touch anything. It's all about me. I guess we have all become totally incompetent now. For years we would work side by side and never a" no, no I'll do that" he trusted me to be able to do my part of our project ,but no more. Heart breaking!!
Jazzy, my DH also resents when I do things, or offer to help to do things that he feels he is still capable of doing, even if they are chores or projects that we used to do as a team - I think its because our LO's want to hang on to whatever skills they still have, and participate as much as possible in day to day living, because they know that they are losing their abilities. Its a real pain, but I am letting my DH continue to do the things HE THINKS he can still do, even if they take forever for him to do, and as long as there is no danger to himself or others. For instance, I know he wants to go out to cut the lawn, but I won't let him - its the only gardening chore he used to do, but the lawn mower can be a dangerous piece of machinery, and I don't want him to cut off his foot or a hand, (or run over the flower gardens). He does do the dishes - but if he starts them after supper, it is frequently noon the next day before all the dishes from the night before are done. The nastiness with the cashiers and waitresses is something we had to deal with last year - we are going to be taking a mini holiday later this month, and I am hoping that he can behave when we are away!
They do want to be useful, like everyone else. My wife keeps asking what can she do. Partly this reflects a loss of executive function and she isn't sure what to do, but she can also mean what can she do to be useful. But often hard to know what she means.
My DH does the dishes but forgets to put them away before bed, so I just go in after and finish up. He gets up in the morning and if he remembers not doing then he will say" oh! The dish fairy has been in again" and just wander way. He is not allowed to use power tools of any kind because he ran the drill bit through his and at the soft flesh between the thumb and forefinger and the Dr. just went ballistic when. She saw it. She jumped up and down and said " no more power tools, no more power tools." I thought I was going to wet myself watching this action between them . He just told her " ok, ok calm down, calm down" one of his caregivers also reported that he was not able to see the distance between his hand and the saw blade on the table saw, so " no more power tools" he is not interested in cutting the grass or snow blowing so that is not a problem. He is to allowed to use the gas stove because he leaves it on for hours and I didn't notice as I was not allowed in the kitchen until he had finished the dishes. Bossy !!! He has no sense of danger and will walk out in traffic if he is not watched carefully. The odd thing is he can still do all our finances, I watch carefully, and does a good job. How can this be?? He can't remember faces and names of people he met a few hours ago.
We have talked before here about not getting stuck on 'stages'. I try to just keep 'mild, moderate, and severe'. When I check stages he is all over the place. From here I know what is coming eventually and also that some may not show up. For me trying to 'stage' him just adds more stress.
My husband has a total lack of realizing that he is not capable of doing things he once could do. He thinks he should still be able to go skeet shooting, use a chain saw, work a skill saw, and drive a car. He wants to do all these things but won't even try to help do anything around the house. Go figure!
He is off today with my son to help out putting in a door in a garage. It's not a difficult job but son will make sure he only does the holding and advising. Should be interesting as neither have installed a door before., but they have a book! lOL! He was supposed to go to stay overnight with his son but decided not to go as son thinks it is to Inconveinient to come here, we live an hour away, but thinks it is fine for Dad to come there. He has no idea about all the ups and downs his Dad goes through or how to calm him when he gets upset. None of the everyday things that go around in our world as caregivers. It seems to be all about him, so no visits for Dad to his home anymore. DH made this decision all on his own as he says he doesn't know them as they haven't spent enough time with him for him to feel secure. It's not that he doesn't remember them he just doesn't know them. Such a sad thing to happen. I guess some folks just aren't able to get their heads around the Dementia thing. So sad as soon it will be to late and he will not remember them. He had terrible nightmares all week and I was concerned that the planned visit was the problem and as it happens he slept all night after telling them his decision not to go. I was concerned that he would have a bad one and that he would get frightened in the strange place.he is to go to respite at a wonderful nursing home next month but he says he will be fine because they know how to care for him. At least he knows he needs care and accepted the help. Better then a few months ago when he fired everyone and refused to go to Day care. I guess we will never know what to expect next will we??
I don't think ppl can "wrap their heads around the dementia thing" because it's their way of coping with it. They will make many excuses for their family members because it's easier for them to deal with. Also, it gets them off the hook to pitching in and helping the primary caretaker. At least that's what my experience is.
I wish I could get my spouse involved in some type of day care program. He has FTD and lacks the insight to see his inabilities. He thinks he can still change in the phone booth and then leap buildings...and stop locomotives....but can't manage to get out the couch to let the dog outside to do his duty.
No, I don't think we will never know what to expect ....for the exception...of the unexpected!
My DH thinks he can do anything. He is like the ever ready bunny sometimes other times not so much. He is very dis inhibited so loves to socialize and that is how they got him to Day care. His son has lots of cash and thinks everyone has to do as he says and follow his lead, but as far as realizing about his Fathers AD he is not even there. He thinks if he spends time with his Father that he can cure him. What a crock!! Soon it will be to late to make some beautiful memories and that will be with him forever. So sad!!
I hope things get better for you!! It is such a terrible thing to live with. Breaks your heart!!