Oh Joan, I can so relate to what you are saying. My once strong husband can barely carry a grocery bag with out moaning & groaning on how heavy it is, while not seeing how many I am carrying. The man who NEVER complained about pain now flinches if I accidently step on his foot. It is so sad like you said to not only see him losing his mind, but see him losing the physical strength he once had. Thanks for letting us share our common feelings.
Joan, I have to agree that it is very disheartening to see and experience the fallout caused by our LOs physical decline, both for them and for us. But from our experience, my DH's physical decline is coming from his VaD. He hurts--and has meds 4 times a day to control that--and the arthritis (barely Dxd is in earliest development). At one time I watched him turn a Model T aound while the owner/friend steered. A 50# bag of Guinea pig pellet was tossed in the truck and then carried into the house, like a 10# bag of dog food. Today he could only manage 1 canvas grocery bag weighing about 6#. His gait is off, he's often unsteady. What are one step directions? Sometimes I'm directing in fractional steps. Sometimes he's aware, and sometimes not, that all is not going like it should. Then, othertimes he does well, initiates an actiivity and follows it through. My sadness hits most when he's having a rough time, but also sometimes when I look at him and see the results of the physical aging. He used to need size 4X shirts for the width through the shoulders, now if not for his belly, he could wear an XL. He used to be 6' and now is about 5'9"--not Dxd with osteoporosis. He's just shrinking in all directions. One of the harder things to SEE happening as time goes on.
For years my hb has not been able to really grip things tightly. I remember I would try to get him to hold my ankle while I pulled my leg to try and adjust hip/knee. He grip would always slip. Jars he had trouble opening also. I wonder if those were beginning signs? My hb is still in the early stages but I think due to the weight gain (30 pounds in the last 2 years) he tires very easily and definitely can not do what he use to. The other day he was hooking up the auxiliary propane tank (so we don't use out of the MH tank). He was huffing and puffing by the time he got done. He too is aware of the loss of physical stamina and abilities. It is sad, very sad and painful to watch.
This afternoon DH started talking about his "affliction" as he calls it. He mentioned starting to go into another room for something and then couldn't remember why he went in; going in the bathroom and forgetting "why". He asked why he could remember things from many years ago, yet can't remember that he asked me the same question 2 minutes ago! HE IS SO AWARE OF HIS CONDITION, and I wish he wasn't. It makes it harder on him when he KNOWS. He is beginning to not be steady on his feet. He is having problems gripping things also. He does still carry groceries in from the car, but not as many bags as he used to. We had to change the batteries in our doorbells - he put them in backwards, then told me it didn't work. When I checked and put them in right, he cried. I just held him and told him I loved him and would always be here for him.
joang, this blog says exactly how I feel. Watching both the body and mind decline is so heart breaking. My DH is very aware of his condition and feels so bad because he can't do the things he has always done.
vicki, I agree, it is so hard seeing our loved one when they know they are slipping. I so wish my dh did not realize anymore these things were happening. I think it would even be easier on me because then I would know what all I had to do. Seeing him hurt and feel so humiliated is horrible. Another thing that is hard for me is to see such a viral looking man being around but then asking him something, like I used to do, and realizing I can't do that anymore becasue he has no clue what I am asking about. I still try to include him in as much of our lives and decisions as I think he can handle. But in reality, I am forgetting that time has long gone by. Now he just sits and looks around with very little conversation. When he does try to talk, he ask me to help him. It is so sad.... If only he had no clue....
My DH was a XXL before all of this. He is now a Xl or L. His hands are so small now. They are almost always pulled into a fist. He is shorter now too. I look at him and think of how small he has become. He was once 6' 2". Some days he is not much taller than me. I am 5' 6". He is becoming more unsteady on his feet. I hate it. So sad to watch. He is so young still, but looks so much older than a year ago. Now I just want to cry, but not in front of him. I need to stay strong for my DH.
My husband is so thin. He is so thin that the pants I just bought him that were one or two sizes smaller than the ones he was wearing in June hang on him. So thin.
I haven't communicated much but would like to share on this issue. My husband began to lose weight prior to the official dx about 3 years ago. He went from XL's to M/S and has had to have a wardrobe overhaul. At the risk of sounding naive, is the weight loss just a progression of the illness? DH's dr offered no explanation for weight loss but said his motor neuron issues (muscle spasms, muscle weakness, unsteady gait, speech issues) were brain atrophy. My DH is 59 has gone from robust to a weak much older seeming man. Husband also gets agitated when there's a future item on the calendar, i.e., appointment, trip, etc. He obsesses and is anxious he'll forget even though I always keep him on schedule. It apparently just comes with the territory but makes the one keeping up with everything crazy!
sisrael - I would not tell him about them. If you want, write them on a calendar and just cross the days off.
My hb has gained weight since diagnosis. It may be side effect of the galantamine, but also lack of activity. Most of his is belly so it could be the disease has caused a drop in testosterone which does cause the belly fat.
Yes, weight loss is a major progression of the illness - sometimes after there has been a weight GAIN for a year or so! Try to not mention what's coming up; it just upsets them. Keep your calendar on your computer, if that would work.
You know, my DH doesn't look at the calender anymore. I stopped writing events on the calender when I started writing them on my iPhone. Maybe it's a good thing, He would probably stress about future functions (as he calls them!)
sisrael, My DH did the same thing. He is now 59, 58 at dx. Lost a lot of weight over a year and a half. We thought something else was wrong. My DH now looks so old. Not the same man he was 2 years ago. Could it be that the brain is working so hard to get through a day that the body burns more calories? I do know that DH was not eating as much, but other than that I don't have a clue. His weight is now stable. I fix all meals and do remind him to eat sometimes. He does do more snacking than a year ago.
blue, did your DH's dr discuss the weight loss at all? As i mentioned, when I brought up the subject, the dr said he couldn't explain the weight loss and indicated no correlation with the dx. I found it hard to believe coming from a renowned neurologist who must see this many times over. My husband eats great when the food is in front of him but won't (can't?) get food for himself,even snacks. He loves sweets. I think he'd only eat sweets if I didn't monitor him. Thanks for everyone's input.
Sorry sisrael, Just now getting back. DR had no clue as to the weight loss. Was sent in for a full blood workup and upper and lower GI scope. All was clear. Now that I know what I know. He was forgetting to eat. He did eat if I put food in front of him, but would not eat if he had to get the food. Was not like that before. His weight is staying the same now, but he is losing muscle mass. Hands, feet, legs, arms, and now shoulders. His middle is still thicker, but feel that is next. My DH will now get snacks, now that he is at home.