Trisinger, I know what you mean about someone from the outside seeing only the tip of the iceberg. In fact, when I was deep in the throes of caregiving back in 2001 and every day was a battle of some sort with my husband, I started videotaping my efforts to give him good care. I was afraid that maybe one day one of us would be hurt or even killed in our normal everyday living situation. I figured if I had documented evidence that I tried desperately to keep him clean, shaved, dressed and medicated then no one would ever accuse me of mistreatment or neglect. Plus, if I was killed or injured there would be proof about what really happened. Is that sad, or what?
I have never been able to watch the tapes, but I have listened to some of the audio....my God, it is frightening and so depressing to hear my voice trying to be calm and trying to eke out just a bit of cooperation....it is heartbreaking and doubly so that I felt the need to protect myself in case something awful happened. Unless you have tried to care for a full grown adult acting like a stubborn two year old, can you imagine what life is like.
Jane, I am not singling you out. I've got the problem with stopping someone who insists on doing things I think are dangerous who has THREATEND TO KILL ME.
My comment has nothing to do with you. It has everything to do with me.
I can't keep you from leaving, although I have tried to stop you in the past. But you are not forcing me off this forum either. Go or stay, do what you will. It has absolutely nothing to do with me.
The police know that he has threatened me with violence. Only once, but that is enough. If something happens to him out there and they send me to jail for not stopping him, that is the way it is. I'll go find myself a good lawyer.
Sandi - I have just now read this entire thread from start to finish & I am so thankful for all your information from way back in the beginning. First of all, let me say how sorry I am for you in the loss of your DH, not just most recently, but from way back when, as he was 'gone' long before he actually passed on. Very hard. You have been through so so much & I am greatful to have read & learned from all you went through. Thank you for sharing with all of us. You are a tower of strength! I hope that I can be as well. From what I read from your posts, I have learned that my DH's "locked legs" is another 'side-effect' of this disease. He still walks, altho slowly, but changing his depends & trying to get him to spread his legs even a little, has really been a huge issue. Getting him into bed, also a very stressful thing because he will 'bear down' and 'lock up' and I cannot move 205 lbs easily. He's 6' and I'm 5'11, but whoa, when there's that locked in, dead weight kind of heaviness, it is just so hard! I am thinking of getting a bed/mattress that will 'raise up' with a remote that will actually help him perhaps to "see" the bed more & maybe with him "raised up", I'll be able to pull him over to straighten him out easier for sleeping. I have gotten to the point of not worrying about his legs being "straightened out" & once I put the sheet over him, he settles down & then straightens out. It's not "him" being difficult with me, it's just the disease, and more & more I'm figuring this out -- most definitely through ALOT of prayers that are being lifted from our friends and family for me to have the strength to do this. Again, Sandi, just thank you so so much for the previous posts! Your words are like water to a person in the desert! God Bless you in the days ahead :)
My DH sleeps 18 hours a day, at least. Yes, I go to the store, I walk the dog when he doesn't want to be walked. I get my nails done. I go to church. I can't be in the house 24/7 to watch him sleep. Of course, as soon as I walk out the door he wakes up, and then paces the house waiting for me, then he goes back to sleep when i get back (LOL). you do what you must. If you have to work, which I did when my MIL was with us, years ago, you do. I used to lock the doors from the outside, so she couldn't wander. At that time, we just didn't know what to do. OK, I could really have gotten in trouble for that. We finally got help, then she went into a nursing home but as i said, you do what you must. Sandi did what needed to be done, for her own sanity, and her husband lived as long as he did because she took such good care of him. We all do what we need to do to survive. Starling lets her DH go on his walks. I would too. My DH has 2 ID's, wrist and neck both with my name, phone number, cell phone number, address, his name, and memory impaired on it. I keep a cell phone on him whenever we go somewhere so If I can't find him, I can call and see where he is, or at least hear the phone ringing. This is not an easy journey, and there 's no training for it. We do what we must. Let's all remember that and not throw stones.
If I could go on those walks with him, I would. The truth is that I can't. He is doing miles, and I count the amount of time I can stand up and/or walk in the number of steps on my pedometer. At this point I can go shopping, or walk outside for maybe 15 minutes. I have a leg that goes numb after 10 minutes of standing or half an hour in a store hanging onto a shopping cart. There is literally no way for me to stop him or go with him.
I consider myself so much better because the cane is still in the closet 2 years after knee surgery. But the cane is still in the house and so are the walkers, because I am going to need them again.
Jayne - On the bed issue, just wondering how you went about getting the hospital bed...did Medicare do it w/a script from the dr.?? Does it have a remote? Do you sleep in the bed w/DH? What size is it?? All these questions, but hopefully you can answer when you have time. Thank you!
natsmom - Yes, Medicare pays for it with script from doctor. It has a remote and bed rails on BOTH sides. No, I do not sleep in the bed with DH. We have slept in seperate bedrooms since he had back surgery about 15 years ago. It just worked out that way. The kids were all gone and I made the biggest bedroom into a sitting, sleeping and computer room for me. It's great to have my space, even before AD made it's debut in our home. The hospital bed is a twin, but I believe longer than a regular bed. The hospital supply store delivered it and demonstrated how to use it. DH's physical therapist (who comes to the home) helped show me how to best get him in and out using the remote. My husband suffers from Parkinsonian symptoms, does not walk much at all and is being considered for a brain shunt for NPH. He is quite helpless and has been on a steady decline over the past 6 months. I hope this is helpful.
Thank you, Jayne - Your info is very helpful. I am sorry you are having such a hard time w/your DH right now, but I'm glad that you are able to have some "space" in the midst of the trial. Thanks again!!
hildann, my dh has the score on the mini mind scale of less than 15,that's the words the dr used in his last report the 7th of this month. why he didn't give a definate number,i don't know. i was just wondering what stage your dh is in,with that score? i consider my dh to be between stage 5 and 6. how are your dhs symptoms? i thought we could kind of compare,although that is difficult,since every ad patient is somewhat different. i am just beside myself. he has been on a downward decline lately. dh is 52 and has eoad. jav
jav, the MMSE is good for identifying certain types of abilities that are affected by dementia, and can sometimes be helpful in determining what type of disorder is involved, but only if the person administering and interpreting the test is properly trained. Many (most?) doctors are not.
I know that many doctors use MMSE scores to "stage" how far the disorder has progressed, but it actually isn't any good for that. It is also often used as a selection criterion for participation in clinical trials, but it shouldn't be. The scores can bounce around all over the place, depending on all sorts of factors, such as how much stress the patient is under, the skills of the person administering the test, etc.
You are probably much better able to determine what stage your husband has reached than the MMSE.
I am so sorry he's declining right now, that can be very scary. This disease often goes through a series of plateaus, where the patient holds steady, and then a slide, and then another plateau.
Jav, I would say my DH (56 yrs) is stage 5 with some stage six. He seems to be losing ground lately also. I have bee giving him more help with dressing and bathroom routines. He is continent but has trouble with his pants/belt often. He is in the bathroom a lot and I don't know if it's a stomach issue or just something to do. I've recently decided it's too dangerous for him to take his 4 mile per day walks on his own. Crossing streets and getting lost makes it too dangerous. I'm going to have to find someone to walk with him when I can't but I haven't dealt with it yet. His speech is also affected more lately. He does ok with his social script but new thoughts are jumbled and halting.
my dh was also having trouble with belt/jeans. it is summer now and i bought him jersey shorts with elastic waist to wear. that has helped but sometimes he doesn't put on his shorts and just wears his boxer briefs. that's okay at home,but i have to watch him about going out like that. he is also continent but a couple of times has dot disposed of toilet tissue properly,i think he just got distracted. when he goes in the bathroom,he does stay a long time,most of the time. he also is having more trouble with his speech,some words or sentences are jumbled or uses inapproprate word. i am getting to where i am afraid to leave him alone. some days i can go to the grocery and run errands. i always ask him if he wants to go. he just doesn't like to go anywhere. when he is having a bad day,which consists of depression and crying,i just won't leave him. i think i am his security and he just doesn't feel safe if i am not here. if i go out to mow or work in the yard,he will just stand outside and watch me. i try to get him involved buy asking him if he wants to pick up over the yard or move things,toys etc. so i can mow,but he doesn't do the right thing and it is just easier to move them myself. he is past mowing,i think. i always have done the mowing anyway,but before he got so bad it gave him something to do,if he mowed sometimes. i try to involve him in things,but it is getting harder and harder to get and keep his attention. his brother and sister in law and niece came today to visit for a couple of hours,this is his favorite brother and best friend and i really thought that would help him. he started acting remote before they left and his has cried the rest of the day. some how the visit made him feel bad afterwards. he and his brother have always been sharp and quick witted and were always laughing and joking and i might add,two very smart men. i guess it just reminded him of how much he has lost. he is not up to much company these days but i thought a visit from him would help. at this point i don't know if there is anything to help. this has been another bad day for him. his dad and another brother came by today after that and our son told them he was in bed,which he was. he was just not up to more company today. his father has hurt him badly this last year and he upsets him alot. i know he hasn't helped his ad. i feel he declined farther when his dad stayed on to him all the time and said mean and hurtful things to and about both of us it caused a real rift in the family. now his dad wants to start coming to see him and he ask my son if i would talk to him if he came to visit dh. i have tried in my heart to forgive ,but it just opens up wounds that will never heal. i would never be mean to dhs father,but i feel i just can't deal with him,now. i thought about just leaving while he visits,but i would have to make the rule that someone else had to be here also,so he would not say anything out of the way or upsetting to dh,but he takes in every thing in our home and then he figures what he thinks i spent on things and then goes a fussing and talks about us. this is only petty thing,but that too gets on my nerves. sorry, more later. dh needs me. jav
sorry about the long post above,but i need to talk and you'll are all i have right now. sunshyne, i do agree with you about the mmse test. sometimes the person that does the paperwork at drs office gives the test and sometimes the dr does it. the dr gives dh so many hints to get his score up and i don't actually know if that really helps matters,as far as getting the right score on the test. last time he only partically did the test and said it was under 15. i don't understand some of the ways drs use to tell how advanced a patient is and i just don't think some are really accurate. dh has cried almost all day. i am at my wits end on what to do for him. i feel so helpless. jav
My DH is on Remeron for depression. It has worked well for him. He is generally in a good mood. I know what you mean about letting him help with things. I want to involve him but he simply can't follow directions at all. He used to enjoy mowing but we hired it out beginning last summer. The yard looks a lot better.
I let my husband help occasionally with the dusting still (no more doing the dishes or clothes, nor running the vacuum, though!) and weeding the gardens. I re-dust after he goes to bed, and the next morning he thinks he did a great job! <grin>
The last time my husband tried to vacuum, he decided to clean out the kitty litter box that way. The vacuum bag got totally clogged and exploded, litter and dust everywhere ...
How about diesel diesel everywhere? In this frugality kick, my husband got a HUGE container, filled it with diesel, then proceeded to try and fill his gas tank...you guessed it..all over him, his clothes, shoes everything, garage floor and indoor/outdoor rug. The he put ALL the soiled clothes in the clothing shute with eveything else there. We will be smelling like diesel for months....better than when he ran over the brand new gallon of paint and covered both the sides of our cars! Can't recall if I ever said I LIKED a challenge.
my dh is on an antidepressant,lexapro and xanax. i have stopped the namenda. i will not put him through taking it again. today has been a better day,much better,i don't know why,but it is. thank god. jav
Returning to the "leaving them alone issue" and Jane's comment. I agree that my leaving him went I went to work would have been considered neglect, had anything happened. I was very much afraid of that. However, I went to ALL the agencies in our state that are supposed to help in that sort of situation - Adult Protective Services, Adult and Aging, Council on Aging, Alzheimer's Association, etc, etc. and NO ONE was able to give me any assistance. My job was our only means of support, so I had to work. (My husband's retirement plan was "I'll work til I die". Hah!) I couldn't pay rent, bills, food, and his credit card debt and a caregiver. I had next to no help from the family - they all work too. So - Catch 22. I did what I had to do, and lucky for me, nothing too horrible happened. But it makes me so ANGRY that a nation of our wealth and abililty has NO SYSTEM of health care or help for the middle class. We caregivers should be marching in the streets - but we are all too exhausted!
Funny, beenthere, I was working when I had my MIL at home, and found myself locking the door from the outside, so sh couldn't get out while we were gone. that was 20 yrs ago, and fortunately, I'm home now, so it is not an issue. i do agree though that some kind of home care should be available on Medicare. It would cost far less than the nursing home we evenually placed my MIl in.
Ok, this is an old thread, but I have to admit, I'm not giving DH the resveratrol anymore. or at least I haven't ia about a month. He seemed to be going downhill, I noticed after I began giving it to him is when he became especially irritable. I mentioned it to the doctor, but the answer was that that was not a side effect of the resveratrol. It was difficult to get him to drink 2 glasses of grape juice every day. I had given it to him in wine, but the doctor said not to. He's started to wet the bed, so I have him in tena, at least for going to bed. I'm thinking at this point it would probably if he just went in the direction he's going. I just don't know what the right thing to do is. He's moving along into the next stage regardless of what i give him. he's on Exelon, 2x a day. who has stopped the meds and what result did you get? thanks.
When we found out my husband had FTD last July we stopped the Razadyne ER, no difference. A couple months later the Neurologist stopped the Namenda, no difference. He has declined over the summer, however, I don't think stopping the meds had anything to do with it...since they were stopped last year. Just a progression of the disease.
Keep in mind that they do not work on all people but unfortunately we do not know if it did until stopping. And, they have no idea how long they will be effective since drug trials usually only go for 18-24 months.
Claude was on Excelon and Namenda for a good three years. When he started on Hospice last November, the hospice doctor took him off them 'cold turkey'. He immediately started to decline worse than he had been.
I don't know if stopping them had something to do with the decline or if he was going to get worse on his own. Everyone reacts to meds differently so you don't know until you try....