My dw has gained 4 lbs in last 3 mo. Diag almost 5 yrs ago. I thought alz people usually lost weight. Some due to not being able to eat. Few items - forgot how to make coffee, doesnt think we are married (44yrs) doesnt know why i am in the house, got up middle of night & wondered where our 2 boys were, (gone over 20 yrs.) Hope this is enpugh to give some one a clue to our situation>
kacnk, my husband gained weight the first year after diagnosis. I let him eat what he wanted - a lot of snacking on ice cream, nuts, and potato chips. I figured that it really didn't matter - let him be happy. Now, he eats twice as much as me, gets very little exercise and has only gained two pounds in the last year. Some AD patients stay at the same level for years. My husband has always been on the fast track. If you will read the stages in one of the secions on Joan's main page, it describes what they do, don't do, etc. at each stage.
Every time my husband forgot how to do something, I just took over and started doing it, until he could no longer do anything. It's going to happen - some more slowly than others. When he asks you why you are in the house, you just say: "to take care of you." I give my husband hugs and kisses every time I come home, and when we go to bed, and when I leave for work in the morning. I don't discuss who I am to him, what my name is (we did play that game for a few months, and enjoyed the different names he gave me! - however, he can't talk any more), etc.
It sounds like he is in Stage 4-5, but some do different things in the stages, so you can't really put a number on them.
My Husband has been in stage6, severe to moderate....he has gone from being very active, to doing nothing but sitting, sleeping and eating...He has gained 25lbs in the two years that we are here in Jacksonville...He was always very proud of the way he looked, I wonder if his appetite will go down, as he progresses..I have saved all his clothes, pants starting at waist 36, to 44. Time will tell.....Rosalie
I've read SO MUCH INFORMATION about AD, but still can't wrap my head around the "stages".......my husband can do many things. He can have a fairly reasonable conversation with you for a short period of time, remembers his medical knowledge for the most part (and EXACTLY how many babies he's delivered), can walk with a walker for a short distance (to the car from the couch or to the bathroom to from his bed) and isn't incontinent right now (keeping fingers crossed). Won't answer the phone, doesn't know what the remote control for TV is, won't cooperate with caregivers. Sleeps most of the day. Only awake to eat or bathroom duty.....yet, I read how some spouses are in stage 6 or 7 and are still able to go places, see a show, enjoy entertaining in the home, etc. So, is the "stage" our doctors suggest we're in a "label" for us to identify with? I know everyone is into labels....we need to know what's "normal". Is this the reason for the labels? Is there "wiggle room" in the labeling? I mean, can he exhibit stage 7 symptoms and live mostly at stage 5 or 6 for example? Just asking....I don't know what I'm talking about. John's appointment with neurologist isn't until Aug. 20. Thanks, Jen.
Also, so all this weight loss stuff is here in the same spot, John is down to 109 or less as of yesterday. Was a normal sized 150-60# guy (but with a big belly). Only 5'7"
Jen....the stages are used as sort of a ruler to measure approximately where the disease has progressed. It is primarily used as a reference point, but does not mean that the will not have days where stage 5 or 6 is apparent. Again, a person's brain is very unique, and this disease ravages parts that control behavior, moods, motor skills, verbal skills, comprehension, reasoning, judgment, memories (immediate, short term and long term), and as the neurons stop misfiring, the can affect any part of the body which is controlled by the brain.. On good days, someone with ad may be "better" than normal, but the brain is the most complex organ in the human body. The stages are only used as a guestimate of where the disease has progressed, not an absolute measurable stage. Most symptoms are common to the ad patient, but again there are exceptions. Some may have more motor skills, some others more cognitive skills, some may lose depth perception, hallucinate, see imaginary people, etc etc....Yes there is a lot of wiggle room.....Stage 7 is determined to be the final stage before death......It can be short, or long.....I know one lady that was in the fetal position for about 5 years, and would not communicate at all..Eventually, the body shuts down due to the massive trauma in the brain... I hope this clearifies it for you a bit.....
Jen, our Neurologists refuses to use Stage numbers. she says, Moderate, Moderately Severe, Severe, End Stage. I agree, my husband is a little bit 6 and a little bit 7.
I probably should have added a little more. We dont cook any at home anymore, and I dont know why we got away from eating peanut buttewr & jelly Or cheese for evening meal.. We eat at senior center for noon 5 days a week. Back to evenhing meal change. Been gping to fast food places. Hambugers, (no french frys though) pizza hut, ice cream cones or shakes. Pancakes or waffels. I did order her side salad but didnt work some times wanted meat sandwich. I t6hink it is still general rule that they lose weight eventually. This is where i may be wrong.
My DH seems to be steadily losing weight. I noticed that his bones are starting to really stick out, especially his shoulder bones. There is nothing wrong with his appetite, he has just eaten 2 scrambled egg, ham, and 2 big pancakes with syrup. It seems strange that his bones starting to show really bothers me more than other things...for instance and few days ago he kept saying his bottom gum was sore(dentures). The next thing he comes out of the bathroom holding what he had put on his gum...BENGAY! I made him rinse his mouth out really well and he now has Anbesol Gel if he can remember he has it and to use it.
DH has been through the gaining and losing weight over the past 2 years. First he lost about 15 lbs. and he looked good. he was never hungry, but he would eat whatever I gave him. Then...it went the other way and now he has gained about 15-20 lbs! Eats everything in sight, always says how good it is. But he tells me he has to lose some because his pants are too tight. I kept all the larger ones when he lost weight, thank goodness! Now he can wear them again.
Jean, that's sort of like my DH - he used the battery scrub brush that I use to clean the sinks, etc., as a toothbrush once! No longer store it under the sink! LOL
I kind of think that in a part of this disease, before they can no longer swallow well, the reason they can eat as much as they do and not gain wt is that ,especially for those who have problems with sundowners,they use up a lot of energy fidgeting, walking, and trying to think and recall if they can.
My hb gained 30 pounds since diagnosis 2 years ago. He is not eating any more but does less activity.. Last winter his primary doctor told him he needs to exercise and loose weight, watch what he eats due to cholesterol (220 big deal), and sugars. Well, we do snack on almonds and mm's a lot. That is the only dietary change. His dad gained weight and really never lost much of it until the final year (of 25 years). As said here, they are going to die so why worry about it!
My husband eats more and has lost weight, but he has Parkinson's as well as dementia and that stiffness must use a lot of energy to fight. I suspect his digestion is also less effecient. My grandmother in the early stages of Alzheimers would have her first drink of the evening over and over--my mother finally switched her to non-alcoholic wine.
My husband lost about 10 lbs around dx--apparently, this is common. Then, once he was put on Seroquel, he picked up weight--can be a side-effect. Now, his appetite has dropped off and he has lost about 15 lbs this year--hope he plateaus soon. I've been giving him Ensure when he refuses a meal, but I still don't think he's getting enough calories.
My DH was 224 until recently. In the last 9 months he has lost about 16 pounds. He eats very well, everything I put in front of him. He no longer snacks. This morning he forgot to eat his english muffin. I think as the disease progresses he is not aware whether he has eaten or not.
When my husband was in stages 4 and 5 he ate a lot and was physically active. In stage 6 he sat a lot and loved his sweets and nuts and I let him eat what he wanted. From the time of diagnosis, until stage 7, he gained thirty pounds. He has been in stage 7 for a year now, and has lost close to 40 pounds....mostly muscle....due to not being able to walk by himself or sit up by himself. He will still open his mouth for everything you want to feed him and chews forever before swallowing, but he is eating breakfast, fruit for a morning snack, a good hot lunch with meat or chicken and two veggies, fruit for an afternoon snack, and a sandwich or veggies or soup for dinner and either a pudding cup, Jello or an ice cream sandwich for an 8 p.m. snack. So he is eating a lot, but still losing weight - muscle weight.
So, please let them eat cake!! The more weight they have before stage 7, the more they will be able to lose and still look like themselves! My husband STILL looks good (except for the blank look in his eyes) even now. With his regular clothes on (which he is dressed in daily) and sitting in his recliner, to look at him, you STILL wouldn't know he has AD!! Of course, he can't talk and his hands have atrophied, and he can't stand up by himself, but he LOOKS good! <grin> (you gotta smile over every good thing!)
My DH isn't aware whether he has eaten or not. He will ask me sometimes if we have had lunch. We went out to eat a couple days ago and did some shopping after. On the way home, he said he was getting hungry. I reminded him that we had just eaten. He didn't remember. This is so, so sad.
The year and a half before my DH dx he lost over 50 lbs. We were thinking something else was wrong. Now that he is home he has put back a few lbs. He has lost a lot of muscle tone. And is now walking 3 times a week. He still looks good. Always thought he was a good looking man:) I now let him eat what he wants. Life has been unfair to him already, I'm not taking away his joy in food while he still has it.