I am just so sad and now the crying comes over the least thing. For so long I just had a lump in my chest and crying wouldn't start and now it is just there a deep breath away. About a week ago dh complained of a bad headache one evening. The next morning there was such a drastic change. Before this it was evident that he wasn't the same and he had been diagnosed with VaD but still he was capable of doing most things he always had. But after what I suspect was another stroke he is gone. I mean really gone. He can still shave, brush teeth and shower if I am there handing him all the equipment. He still knows to go to the bathroom if I show him where it is in this house we've lived in for 26 yrs. He cannot mow the grass because he roams all over the place with the mower. He cannot feed the fish in our little pond. It is just so hard to see him like this. Sometimes the things he says are so far out I have no idea what he is talking about. And he is hungry or thinks he is all the time. I took away those appetite pills he had been taking because he had lost so much weight. He knows who I am but still talks to me about E. - thats me. He gets up maybe 5 times a night to go to the bathroom and can't find where to go. The other night he shaved three times one after the other. When I told him he had already shaved he got really angry and I backed off. That is when I knew I had to stand right beside him and when he finishes I put the toothpaste on his brush and as soon as he flosses I start his shower running. It's the only way I know to keep him from repeating the same thing over and over. I expect these are not behaviors that others have not been through but when it is so sudden it was a real shock for me. I don't know how to be a caregiver - but I sure am getting "on the job" training. I am on the edge all the time wondering what is next. My sister is visiting for a month. Her husband had dementia from several strokes but he never declined to this extent - his end came from lung cancer. But she is familiar with this sort of behavior and knows how to deal with dh. It is a break for me to just get to look at the computer for a little while. It is also so great to have someone to have a conversation with. My sister in ALF has aphasia talking with her is like filling in the blanks puzzle, poor soul. Well enough of my whine I just know those on this board know and understand -- thanks.
flo39. So aptly put when you say caregiving is "on the job training". We just learn as we go along. The past week my dh showed signs of further decline also. I wonder if the full moon brought it on. When my son and family come to visit in July, they will be shocked. I told him to put something in the kitchen. He wanted to know which way to go. Asked me if I was going to stay permanently and how did I get here. I guess I have become a "housekeeper in residence" sharing his bed. My daughter came today so I could go to church and not worry. She noticed a change in two weeks also. We just have to put our seat belts on and get ready for all these horrible things that happen to spouses as the horrible disease progresses. We have to ask for help from family, if we have them. Right now I can't fathom the idea of bringing a stranger into the house but who knows? Time is coming when I will have no choice.
Whine all you want although I wouldn't call it whining. You are stating like it is.
flo39 & shirley, my DH is also in a decline. He did not recognize our daughter who lives across the street ( he hasn't known her as our daughter for a while now, but he at least knew her as a friend). He has been crying more lately & he his agnosia is getting worse. shirley I also can't fathom the idea of bringing a stranger in to care for him because his paranoia is also getting worse, especially of strangers. flo39, you (we) aren't whining, we are just unburdening ourselves to people who understand all too well.
So sorry flo, most of us got our "training" just like you. Its kind of like "winging it". I have also learned so much from this group.someone here has already experiences and thank goodness every shares their story. Hang on! Bless you.
The sudden sharp decline were the hardest for me to accept. I kept hoping against hope that he would level off and go back to where he was previously. It is very difficult to try to come to terms with the losses. We do understand and no, you aren't whining, you are sharing with people who truly do "get it".
As hard as late stage is, and as much as I still wish to have "My Lynn" back, I wouldn't want to trade places with any of you in the earlier stages. I don't honestly think I could survive it again….
One of my favorite quotes….
“Experience: that most brutal of teachers. But you learn, my God do you learn.” ~C.S. Lewis
I too see decline...DH walks so slowly and has to sort of grab the door jam to pull himself in the house, refuses help, refuses to use the cane...does not go on the walks he is supposed to do...he argues, is always cold, eating is a nightmare. Watching him get dressed in the morning is getting harder to do, he will do it himself but getting him out of the same old duds and into clean clothes only works if he has a doctor appt. otherwise it is more of a job of nagging on my part. Comes out, tells me if I didn't put his meds out he would forget, then tells me he can do it, then falls asleep at the kitchen table because he won't use his cPap machine. Snoozes more during the day and when the TV is on, it is Cops or kick boxing or something that has action but nothing intellectual to follow.
Tomorrow is our 35th anniversary. Today my bil and sil were here and I was asked if he remembered the date, had he said anything..nope....and today we even talked about events leading up o the big day...not a glimmer. So now what to do tomorrow..I have a couple cute cards for him, but I think I am going to hold off saying anything...he felt bad when he forgot Valentine's Day and Mother's Day....this would be worse...I think I'll just tell him we are going out to dinner...I feel like I am marking the day all by myself. The thought came to me that now his memory goes to pre Mimi days.....he gets his military medals out and loves to look at them...proudest of his Purple Heart, though he has medals that are far more senior...
If it weren't for the doctor appointments and errands than are not especially rewarding, my world too would be windows and walls.
First off, Happy Anniversary to you MIMI,,,,,,, it will be hard but try to remember the better times. Like Nikki, I would never trade places with those that are in the earlier stages of this disease. It is too hard and but by the grace of God I would not have made it thru once much less twice. The declines are so hard because we are so reminded of what is being lost. Just love them, hold them, and keep them safe. You will learn what is important. As long as they are safe it really won't hurt that they do things over and over. It is harder on the caregiver than it is our loved one. If they are happy, thank God. Just love them....... make memories because that is what will eventually get you thru the rough days..... I pray for all of you that are going thru the fast declines. They make us hurt and so unsure but know that we are all here for you if you need to vent. Don't hold the hurt in cause it will do more harm to you. We are a family here and love one another and need each other. Feel free to Vent, Cry, Scream, as long as you come back...... hugs.....
flo39, shirley, elaine, mimi and others - sorry for the decline you are having to watch your spouse go through. This truly seems to be a really bad year for our family here. Hugs and prayers for you all and everyone here in this family
Feeling bad today - dh roamed last night. Up to the bathroom at least three times ,that he couldn't find in our bedroom. I was up guiding him then back to bed and it seemed I never got sound sleep all night. I had a kid who mowed ? the lawn and he did a very poor job so all night I kept going over over that and the conversation I had with his mom. I should have looked at the lawn before paying him but like the lazy person I am I didn't. The next day when I did look I was so disgusted. Large spots completely missed and others not touched. He will come back but his mom talked about rain, etc. yikes! So then dh would be up again looking for the bathroom. Today I told him I had the money to have the dead tree removed and he said we can't do that it isn't our tree! So another day. My dear sister has made brownies and is making soup now. Did I mention she is 86? the energizer bunny in a 5' 1" gray haired package. What a life - but what does dh have but confusion. More tears today.
Well now I am sitting here crying. I knew that my DH was in a decline, but I didn't realize how much until a few minutes ago. He has been fluctuating between being agitated & crying. He keeps saying that he wants to watch the Lone Ranger on TV so I put the DVD in, but he keeps telling me that it's over (agnosia at it's worst). Topping it off, our 12 year old grandson came over to say Hi & we were talking in the kitchen & I saw DH looking at us & he had that hateful look on his face. He came in & started saying how all he wanted to do was go home & watch TV. I pointed to the living room & told him that the TV was in there & then our grandson said, “Here PopPop, I'll show you where it is,” & he started to take his hand & DH pulled away & said, “Don't touch me.” I said, “That wasn't nice, that's Trevor, he was just going to show you where the TV is.” Then DH started to get nasty so I told my grandson to go home. I told my grandson that I was sorry & he said, “That's OK MiMi. Mom told us that PopPop was having some bad days.” He is getting nasty again & I foolishly thought that since he went through the rages over a year ago & I got him on Seroquel he wouldn't go through that again. (stupid me!) I give him on 25mg of Seroquel at night & it does help him sleep, but this morning I gave him a half pill hoping that it would control some of his agitation. Depending on how it works tomorrow I might up the dose to a full pill in the morning. I'd rather have him dosing in the chair then being agitated at me. Flo39, enjoy your sister being there with you. You are blessed. I love my sister & she understands the situation, but there is no way that she would be able to handle being with DH for any length of time.
I am so sorry, Elaine. It must hurt so to see these changes. How nice of your grandson to be so understanding. I have a son and family coming to visit from Kansas City in July. It has been a year of changes since they have seen dh. I am hoping and praying there are no outbursts to frighten the three little ones. Please no agitation.
My Dado sounds like he is right on the heels of your guys, flo39, Mimi, and Elaine H. He could not remember my name the other day, he knew who I was, but guessed about 3 names before I told him to stop. Later it was no problem to remember, "Patty"
As to violence, so far so good. However little things. like when I put his plate on the table and it banged his cup, he almost exploded. I think it may be the drugs, but who knows. Either way I am not taking him off that Seroquel it has been a life saver.
He also has to pull himself up the stairs slowly. And the other day, I had him take a bath instead of a shower. Mistake. Even though there is a rail, I almost had to call someone for help to get him up. He is not a big man but his weight was solid I could not budge him. Got in the tub and finally we managed.
Shirley, coincidentally I also have a son & family coming for a visit in July, in fact they are moving an hour away (they now live 15 hours away). They were here at Christmas, but the change has been drastic. My children are very good at explaining PopPop's condition to the grandkids & even though they are young they seem to understand. Is your DH on any medication for agitation? Like I said, mine is on Seroquel. I'll pray that your son's visit goes smoothly. Sometimes all we have left is prayer.
My dh became slightly agitated two months ago so pcp prescribed Paxil. I give it to him at bedtime. Took a couple of weeks to really kick in but it did stabilize his mood. Dr. said I could give him twice as much if needed. Yesterday some man came to the door saying he was running for office in the township and left a brochure. After he left I said to dh that the elections were August 9. Well dh had a fit and said it can't be. Oh yes, two months away. We are at the beginning of June. Boy was he mad. Goodness knows what he is thinking. You'd think I was the one who decided what day and month it is.
I am praying also that with all the people in the house, he doesn't go haywire. Another son and kids are coming third week of July. Then in August oldest son is talking of coming with his two but they are much older. I better start building up my resistance...calls for lots time in the kitchen.
When my DH was at the earlier stage..startled by loud noises,etc. when the grandchildren came to visit, kept him in a quiet room in front of TV/DVD. Children told that if he had an outburst it was more from the noise they were making and not about them personally. Now he enjoys sitting in the middle of the chaos for a period of time. Shirley if your reference to kitchen has to do with all the cooking for these visits...go easy on yourself...give the kids an opportunity to make a dinner for you, send out for pizza. Ask for help. If you are like me and love to cook them make sure to involve family in preparing and cleaning up. It took me a while to ask for help and found they were more than willing to help to ensure I was able to enjoy their visit. Have fun!
Another sad day. Dh knows he needs to go to the bathroom but doesn't know where one is "open". I have to take him every time. But I'm so thankful he knows when he needs to go. Last night was more restful. he again complained of a headache and this time I gave him tylenol and that may have helped him sleep better. Getting ready for bed is still a dance on a tight wire for me as he doesn't remember shaving once he is done and I have to get the toothbrush ready and then the shower going. Once he is in bed he usually goes right to sleep. At least last night he was only up three times. I'm going to try to bypass his usual popcorn and coffee after supper. Hope he doesn't remember that. Our neighbor took the 5th wheel to the camper place on the interstate with a For Sale sign. Just another chapter closed for me. I pray it will sell this summer and I don't have to bring it back. I was concerned dh would be upset but he was completely unaware. I know others will understand the terrible heavy feeling in my chest.
Oh flo I can relate to the bedtime dance......been using an ativan to make things go smoother and it seems to be helping. DH can't shave anymore and currently can shower with guidance. Our decline seems steady and of course down. Made a huge change in the his bedroom yesterday, carpet up linoleum down. The constant cleaning of the carpet has been exhausting. That for some reason truely saddened me .....more like a hospital room then a bedroom. I was struck that I was prepairing his Nursing Home Room at home. And in all of this last night he ask me "are you going to leave me?" I said "never" but my heart was saying your leaving me.
Terry 54 - I keep thinking about the carpet in the bedroom. It is old and I know very dirty even with vacuuming it still has dust in it. I wonder if I should have it taken up. We have put down hardwood floors (did it ourselves) several years ago but not in the bedrooms. It wouldn't be hurting the carpet if he had an accident but what a job to clean up. Just something else on my list, I guess. Anyone have any suggestions?
Flo, my carpet was stained and ruined, I didn't want the expense of replacing the entire carpet right now.....so since he's block in a smaller area and I went to the Carpet store (local guy who's Mom has ALZ) and explained what I needed. a Pee Zone that could be easily cleaned. He pick a commercial grade material used in places that may get pee on and we replace just that section. It was christened last night and all we have to do is wash the floor today and not the carpet or 12 towels that sat on the carpet each night. That alone is wonderful. Because of Carpet guys understanding he had it done for me in less that two weeks. Bless him. It's the ever changing world we live in.
Flo39. Consider replacing the carpeting with a soft tile. You want something easy to clean but also minimize the pain if he falls. And don't spend too much so you can them replace it with hardwood or carpeting later.
We haven't had this problem yet but we do have carpet in the bedroom. I love the soft feel of carpet in the bedroom but am wondering if I should go ahead and have it replaced now or wait until it hits us full force. Flo and Terry, I can also relate to the bedtime dance.
DH has really declined since he took the Keppra. And today when the home health nurse asked him what year it was he said 1929. After she left he asked me if I had re-decorated this house since it isn't like it used to be. He is going further and further back in time. He is leaving me - a little at a time.
Yes, my Dh is declining fast too..thought we had a dog in the house last night, we don't have pets....made me a coffee, only to go and make me another two cups of coffee as i was drinking the first one. We lost our side fence in a wild storm on Sunday,,, he can't underfstand what happened, and doesn't remember a thing, even though we were up all night with no electricity..has no idea what day or time it is..
Elaine, I have problems with Lloyd and the smaller grandchildren, too. When he grew up, he was told to go outside and play. Children were to be seen and not heard. Our oldest grandchildren are ages 16-24; the youngest are 2-9. The 2-yr-old seems to be the most attached to Papaw. Lloyd was pretty far gone when he came along. He is forever walking up to him, putting his little hands on his knees, and looking into his eyes and saying "Papaw". Last Sunday, he took his hand and walked him out of church. For the most part, he seems to be forever reprimanding the little ones and I am forever reprimanding him for doing it. Terry and Flo, I had the house recarpeted in 2010 when we added the third floor so our daughter could move home to help. I went nutso the first time he peed on our bedroom carpet. Now, I clean it up as best I can (Little Green Machine) and move on. I figure when he is gone, I will just replace it. I want the carpet so when he falls the floor will be softer. Flo, maybe if he likes the coffee, you could give him decaf. Just a thought.