This has been an eye-opening day and a very sad one for me. Since the episode with the jerking and the falling a couple weeks ago, DH has not played on his laptop which he did every afternoon for 2-4 hours. Not watching much TV. This afternoon while I was cooking dinner, had the TV on to his favorite -NCIS. He kept asking me questions, which I answered, but then he said he couldn't watch it because he couldn't keep up with the fast moving "things" (characters). Then he said he couldn't do all his crosswords because he couldn't find where the answers went every time. Then he told me he couldn't play golf on his laptop because he couldn't see where to aim the ball on the screen; and the card games - they moved to quickly and he couldn't keep up.
It's so much worse for them when they KNOW! He is so depressed now because there's so many things he can't do - that he could do just 2 weeks ago! I did ask him this morning if he wanted to use the Swifter in the kitchen, and he did that; he unloaded the dishwasher, put the dog's food dish in the cupboard; took me forever to find it to feed the dog. Can't fix his cereal now nor pour milk from the container - his hands shake so much he spills it all over.
I know I'm rambling, but this is all so new. He has done so well. But, then, he will be 87 this month, and I don't believe it will be too long.
Vickie, I am sorry about the changes in your husband. I know it is really hard on you and I hope you will weather the latest "storms". You are a strong lady or you wouldn't have made it this far. Hang in and God Bless.
sorry to hear of this fast decline vickie. has he had a workup by the pcp for blood /urine check just to rule out anything that may be causing new symptoms? just a thought. sometimes when they decline quickly its worth a check to be sure. divvi
I am so sorry to hear your hb has gotten worse. It's hard no matter how you look at it. You always have all those wonderful memories and who knows maybe much more. I take everything one day at a time with my hb. Our time here on earth is limited so I make the best of it. Take care of yourself.
Vickie - It's so scary when things suddenly change. Things seem so good for awhile we tend to forget (just a little) about this disease and maybe things will stay good for a while longer. Then, a short time later, something happens and you realize again it's not ever going to get better. We've been in the "good" mode for months but I'm seeing the "bad" mode peeking in a little bit at a time lately and I get shaky and wonder if I'll be able to handle the "bad mode" as well as I did before.
Hey Vickie...as Briegull said...my husband was where your husband is several years ago! By the way did you tell the doc what you witnessed...possibility of a seizure? While it may be the normal progression of the disease still need to discuss this with his physician. Agree, that when they are still aware of their short comings is probably the worst of times. They feel so inadequate. Hugs.
Yes, scs, did talk to his doctor and also his son, who is a neurologist (not DH's). Really no way to know exactly what it was: partial seizure, TIA, small stroke, I keep a log of when these things occur, time of day, etc. They all have occurred around 4-5 p.m. He doesn't remember any of them.
No hypoglycemia problems. Eats lunch between 12-12:30. Usually a sandwich and fruit and sometimes a small dessert. He does not snack during the day - never has and neither do I.
Humor me...try snack around 2:30- 3pm ...sometime in middle of lunch and dinner. Seems like a long time for him to go without food and his symptoms could be correlated with a drop in glucose. xo
((Vickie)) How is your DH doing? I might have missed it, but did you have him checked for a UTI as Divvi suggested? 9 times out of 10 when Lynn had a quick decline, this was the culprit. Forgive me for not remembering, is he on anything for depression? It is so heart wrenching to see them sad isn't it... keeping you in my thoughts ((hugs))
Yes, Nikki, no uti. Is on Sertraline for depression - has worked very well so far.
Actually, today he has been soooo much better! Why??? Don't know, don't care - just happy. We sat on our back porch looking at all the pretty flowers blooming, he was talking, joking just like the old DH. Couldn't believe it!
On a whim I stopped giving him Salsalate Saturday - just gave him Tylenol for arthritis as we used to. Now I need to go and check side effects of Salsalate - can't remember - too many meds.
I do believe it was the Salsalate that caused the problems: Weakness, lightheadedness, off-balance, may impair thinking (?) and reactions, numbness one one side of body, may make you feel like you are passing out - and he did - twice. Took him off it Sat. and by Sunday night he was already feeling better.
Another change: All of this bad weather seems to affect him negatively. Storms rolled in at 3 a.m.- so we've been awake since then. He usually sleeps about 12 hours each night. At 4 a.m. he asked me if his mother was still alive - she died 22 years ago. Then a little later he asked me how my mother is - she died in Nov. of last year. Then asked how long we have been married.
After breakfast, he took Millie for a short walk while it wasn't raining. Came in and asked me if we are married. I said yes and he asked if it was "listed" somewhere. Told him yes, it's all legal. He said he just wanted to make sure there were no problems. I assured him there are no problems.
Didn't know whether to laugh or cry!
Just wonder if this is the beginning of forgetting who I am. He always calls me by name - but hasn't this morning.
This may not last, Vickie. Several months ago, my dh had forgotten my name and always said things or asked me the same questions your dh is asking of you. That seems to have passed. He now says my name and if he comes into the house and I am not in sight, he calls me by name. We watch tv in the den and our wedding picture is hung on the wall over the TV. I find him looking at it a lot. One time he asked me if I had lived here very long so I know he wasn't sure about my reason for being here.
During those months he had forgotten my name, he would whistle for me. You don't know how that aggravated me. I felt like a dog. I hope he doesn't forget my name again but I am realistic and know the worst is yet to come.
The other day there was nothing much to watch on TV so I turned on one of the music channels. He started whistling, not melodic but a screeching type. Maybe he thought he was in tune with the music but the noise was so bad I had to leave the room. This whistling is something new for him. Never whistled in all the 56 yrs. we have been married.
Last night we went to the supermarket to pick up a couple of things (his favorite pastime). From there we drove to Arby's for our supper. A younger man came up to dh and said, "Hi, Tom." He saw there was no recognition in dh's face so he named himself. I knew who he was, a man who had worked for my dh for years. The encounter didn't seem to bother my dh like it would have in years prior if he didn't recognize someone. I really felt sorry for the other man. My dh worked until he was 74 and was always sharp. He retired and about 6 yrs. later at age 80, his memory started going. Now at 85, he is quite bad. Sometimes he can't remember what happened 24 hrs. ago. Other days it is better.
The other day he came up from his workshop in basement and asked me if I had put some of my "stuff" in with his tools. Of course not. He says his stuff is all missing and now there are lots of tools that he doesn't know what they are for. Oh My.
Hang in there, Vickie. I always give my dh my undivided attention when he speaks to me because I know the day will come when he won't talk to me. His word substitution gets pretty difficult to figure out and sometimes it is just impossible. I have learned to live for the day, tomorrow could be much worse.
Hmmm. I don't think my dh has called me by name the last couple weeks. Vickie, so sorry. But it may just be part of the roller coaster, so hang in there.
Dear Vickie, the progress of this disease seems to me to take many different turns and twists. My husband was down some strange and horrifying paths until 2 months before he died, and then he was as lucid, loving and full of humor as he'd ever been. Other functions, such as the ability to swallow, were compromised, but I did have him back in that vital way.
Things are changing very quickly here, also. DH suddenly, almost daily, changes what he likes to eat and drink. He used to have a brandy in the evening, no more. Then he wanted wine, red wine. Now it does not taste good. Then he was drinking ice tea. Yesterday, he told me that the tea was too strong. Of course, after not liking all these drinks, I find him drinking a glass of chardonnay. Also, his feet hurt and he tells me he wants shots in his feet and hands. He knows that he had shots before. When I ask him where, he says you know, up the hill. Now, he is angry because I will not take him to get shots. In church he sat holding his head.
Things are also changing here also. March 12th when I brought my husband home from ALF he was walking, now he is not walking.Goes from the Hospital bed or recliner via a Hoyer Lift. I think atrophy is setting in his right arm now, it has been in his left for some time. He is only awake about 3-4 hours of the day. He still is eating & drinking...just not as much. He seems to be at peace though...no more behavior problems. His breathing is so sallow when he sleeps I stand & watch to make sure he is breathing.
One less worry. My DH never called me by my name. He always called me "Honey". I know he still knows me tho because when the aides ask him who I am, he always says that I'm his wife.
Then to top it off, I had put a turkey breast in the slow cooker this morning for our dinner. Went to check on it about 3:30 - guess what?? SOMEONE had unplugged it~! I know it wasn't me and he surely did not remember doing it. So, I blamed it on Millie - and we'll have turkey breast tomorrow. LOL
Vickie, I have found that as the seasons change so does my DH. Dr. put him on Seroquel about 6 weeks ago and he seemed to get worse so took him off of it after 3 weeks and he is still getting progressively worse. Does not sleep, his OCD's are worse, and he is totally confused about almost everything. Paces constantly as well. During this time he also did a face plant into a chair so I know we are entering a new phase. He still knows my name but cannot recognize me in a picture. Guess we all have to face these changes. <<<<<hugs>>>>> to you.
My DH has shown more of a decline in the last few weeks. I feel so sad facing up to the reality that he has Alz. I wish that I could enjoy him more as a husband instead of a caregiver. I am glad that summer is coming and I will get to have more time with him. He was so confused when we went out of town for spring break and for Easter. He declined so much at this time.
phil 4:13, my DH paces constantly as well. I never thought about the seasons changing, that kind of makes sense because of the barometer pressure and all that kind of thing. Interesting to say the least! Doesn't help in coping with it but it I remember when he was dx'd and how it explained a lot of things that he had done or said and for some reason that made me feel better knwoing what it was and not just thinking he was being a jerk.
Another change: He eats breakfast 7-30 to 8:00. Lunch 12-1:00. Dinner 5:30 -6:30.
Now he wants lunch at 11; then he wants his glass of wine (cream sherry only), which is now turning into 2 glasses at 3:00 - then dinner at 4-4:30. Then he is in bed at 5:30 to 6:00.
I have tried snacks between meals - doesn't work - he won't eat anything between meals. I know he is bored, but don't know what to do about it. He's stopped playing on his laptop; does a few crosswords, empties the dishwasher, sets the table, folds laundry, but I just can't seem to keep him busy all day long! Can't follow a TV show and doesn't even like to have it on now, because it only confuses him.
Maybe it's the change of weather. I'll hope so, until I get another bright idea!
Vickie, I’ve had the problem for quite a while with my DH being bored because he doesn’t do anything, so I know how you feel. Just in the last few days I’ve seen a decline. He has trouble finding the right words to use, he seems more confused & today he just seems to want to lay in bed. He hasn’t really been able to follow TV programs for a while, although he does seem to get some of the funny lines on the sitcom reruns we watch (unless he is just laughing along with the laugh track!). Very frustrating indeed!
Elaine, DH is also having trouble with finding the right words now. I am so often finishing his sentence. Just can't stand to see him struggle so! I did ask him if he wanted me to "fix" his laptop so he could use it more. He said yes, so I "worked" on it, got it "fixed" and gave it to him. He is playing right now, but don't know how long it will last. I think part of the problem with the computer is his right hand shakes so much, it's hard to control the mouse for the golf game he loves. He did water the indoor plants this morning, unloaded the dishwasher - now I'll have a treasure-hunt!
It's raining again - and that bothers him too. He said he wanted a thundershirt like Millie has! LOL
Vickie, All this sounds so much like what we are are dealing with. DH no longer uses his computer, has lost interest in TV and has many physical complaints, including hands, feet, back. I had to take him to the ER for chest pains on Sunday night, but he did not have a heart attack and I took him home after six hours. He had to stop going to his morning program because he had not participated the last two weeks and complained all the time he was there. There were issues with his yelling at volunteers. I am now looking at some home help so I can have time to take care of myself. We have appointments scheduled with a cardiologist, physical therapy, a back doctor and a psychiatrist in the next three weeks. Just when I think it can't get any worse, it does.
Before I noticed distinct memory problems with my dh, he was having a hard time communicating. From just losing words, he just couldn't put a sentence together. There would be clues so it wasn't too difficult to figure out what he was talking about but now it is worse. Once my dh retired, at age 74, he wanted nothing to do with games on a computer. Once in a while something might show up that I think would be interesting to him so he will sit down and go through it. Right now he is vacuuming which he loves. He looks at the tv but I am not sure he could tell you what he has seen. Baseball and the golf channel are the ones he enjoys. Doesn't seem able to read and comprehend what is on labels of window, basin or toilet cleaners. Decided to wash a couple glass block windows and he was ready to use carpet cleaner. Good thing I was home.
Is the mouse built in to your laptop or do you have a pc with regular hand-held mouse? If it is the laptop with built in mouse, you can buy a little plug in and use a regular mouse. A shaking hand might handle that better.
Shirley, DH loves to vacuum also and I let him - he does both the small rugs and hardwood floors. And he loves to "blow up" the indoor/outdoor carpet on the porch. He means blow off. LOL
The mouse is a hand-held for laptop - he never could use the built-in on the laptop. I think his hand is just trembling so much, the mouse jumps around more and it confuses him since he can't control it.
This sounds so much like my dh. He is slipping away before my eyes. I put two movies on for him this week and he said...."I don't like these movies they are so confusing." I have known for some time he couldn't following much on TV...but, he acted like he did. Now he just doesn't want it on anymore.
Think he is entering stage 6 now and his speech is getting worse by the day. Things seem to have gone down hill fast in the last several weeks.
I am so sorry to hear about the rapid declines of all of the loved ones. I looked at this topic and knew it was talking about the loved ones but couldn't help but think who ever thinks of th rapid decline of the caregivers. I guess I am having a very negative moment or so but this is really getting to be a heavy load. My dh can't do much of anything that does not include stress me out. He laughs at the bad things that happen and loves to make me and our youngest son, who helps me a few times a week, upset. His vocabulary is one or two words at the most and he can't do much else. He wanders all the time now and has more opinions since he can't talk than when he could. He really knows the ugly looks and motions for his wants. He never ceases to amaze me at how he looks so normal and is so very far along. I am so ready for this to be over. I know this sounds bad but I really don't know how much more I can take. I am constantly sad and upset. I know this post is not about caregivers but I just had to vent on this subject. Thanks for listening.
I know just how you feel and I am sure there are many more caregivers on here that feel the same way. It is like you know this illness is not going to have a good ending and getting to the end can take you down also. Yes, I agree with you I just want this over with....I am so tired.
Better living through chemistry, ladies. Your PCP should be able to find a med that can smooth things out. Now is NOT the time to go all natural and suffer in silence. Things will get better when they regress more and sleep more and talk less.
Even though my husband has stopped walking & sleeps all but about 4 hours a day, since bringing him home from the ALF. On the bright side he has started saying more words..not a sentence, however, he did tell my helper Bye last night. He also smiles a lot, which means the world to me.
I love briegull's comment about now not being the time to go all natural and suffer in silence regarding meds. Amen to that. In just a couple of days after joining this site, I have learned more about what this whole thing is about than from any physician I talked to or any book I have read in the last two years, keeping in mind that I WORK part-time for a physician. When I read about the slow walking (drives me nuts), slow moving, declining handwriting, the bewildered looks, and all the rest, it all makes sense in a weird sort of way. At least now I definitely know I am not alone -- and that this is the new normal. This is the best support I have felt in a long time.
Mammie, I like what you said about the decline of the caregivers because I agree that we have a decline also. I just increased my dosage of anti depressants and it is still not enough. I am having a really hard time dealing with the decline of my DH, he is getting a lot more verbally abusive and I know that it is not him doing it but it is still hard to take. As long as he is still alive he is still my husband and I am his wife whether I am a caregiver or not doesn't seem to matter in this case. I don't know how much of this I can take anymore either but...I am going to have to take as much of it as is dished out.
Okay, this may not work for every body but when I am trying to help him and he gets ugly I have started telling him okay, do it yourself and I walk out of the room. He gets pleasant in a hurry and does not remember what he said.
Bama, I do the same, except that I do not tell her to do it herself. I just walk out. When I come back a couple of minutes later she is all smiles and cooperative.
Seems like the slow walking stage was 10 years ago, just actually 2008. Now bedridden except when helper and I place him in wheel chair or potty. I just changed poop diaper and don't know how long I can do this! Helper only works 8 till 4. Doctor said could place in NH but for financial concerns I can't. Attorney son is getting court date for conservatorship so I can sell land. Already on meds and don't know how much longer I can cope. I hate this d--- disease.