We are in a new phase, but I'm unsure what to name it. In the past year G needs to know where I am at all times. If at an appointment, he will call to find me, but now he gets in the car and tries to find me if I am a bit longer than he thinks I should be. I'm talking just minutes. I have told him to just call me on my cell, but he couldn't find my number...it was written in large letters and attached to the kitchen counter just this morning! He seems extremely confused about telephones now. Our son just picked him up for lunch..it's a three hour drive for him..and told me to take a break and stay home.(:-) This driving all over just has me floored! And, wanting to know where I am? He is in his "You disgust me" mode right now! It isn't lurking, sundowning..is there a name for this other than "drive me nuts?" Our new DIL is the wellness director for a large senior center, so she is very knowledgable of stages, so I thank her for our son's awareness.
Yep, been there, done that. Calls, driving to find me, searching for me around the house, getting angry (probably scared) when he didn't know where I was.
One day, one of our cats wasn't feeling well and he got very worried about her. He called me several times leaving messages on my voicemail each one getting stronger in language and nastier. I was in meetings at work so when he did not hear back from me right away, he drove to work just so he could ask me about it. Fortunately, by then everyone was aware of his diagnosis so they were very good about it.
If I took the dog for a walk and was gone longer than he thought I should be, he would get in his car and come looking for me. The usual walking time was about 20 minutes sometimes 30. If it started getting dark while I was gone, he would go even more spastic. I always invited him to join me for the walks but mostly he declined.
This too does pass, I like the name "drive me nuts" as that so aptly describes it. The hard part for me was when he would yell at me in front of others and I would be the one looking like I had done something really wrong. This all happened before and just after his diagnosis when I was extremely ignorant of what the disease entailed.
Hang in there, you can survive this - it takes patience, patience and more patience to try and understand that we are their anchor and link to reality -- it is frightening to them when we aren't right there for them
Thank you Therrja, it always helps to not feel alone..damn, but I hope this stage passes soon. Patience is NOT my long suit. The couple of "maintenance" places I go know the situation and are very good about dealing with him when he calls, but this driving thing has me spooked. Our son wants him to stop driving altogether, but I don't feel he is there yet...shouldn't say or think things like that..they always come back to bite me!
Check out the driving thread on whether he should still be driving or not. Most of us have found that to be a very difficult issue - see Joan's Blogs on the subject too.
Hindsight is such a wonderful thing. Looking back, I really wish that I had a much earlier diagnosis and had a site like this to go to. I think it would have helped me a lot in understanding what was going on. That knowledge would have probably changed how I handled some of what I was running into.
I did read/browse several books but have learned a lot more with this site and the ALZ.org caregiver site.
Being anxious when separated from the primary caregiver is a VERY common symptom. Every time my husband has testing of any sort, they ask if he's showing signs of this yet. We're not there yet, thank heaven.
Part of the problem is that they lose their sense of time. So you can tell your spouse you'll be gone an hour, come back in fifteen minutes, and find them panic-stricken that you've been gone far too long.
Some people have had a little luck putting big signs in several places around the house, explaining where they're going and when they'll be back. SOME people.
Yep, I hear that. I leave a notebook with what, when, and where directly where he will be...BUT...one has to read it to make it work. All these wee lessons learned...hope someone is writing a dairy to eventually be a great learning tool.
I'm trying not to have a panic attack thinking about our November cruise..and getting there and back...ok..day at a time.
I left a picture of me taking the dogs out for a walk when I went to walk them. I came back 15 minutes later and he had paced, rearranged, opened, shut, was very worried about where I was, etc. When I found the picture and showed it to him, he said, 'How did I know if you were in there or not?" It seemed like such a good idea, but we have no idea what is going on in their heads. I know my DH is so afraid and anxious and I'm his only security. It's just that I can't take the smothering and trapped feeling. So I do hire people to stay with him even though they say that he worries about where I am the whole time I'm gone.
My husband doesn't want me to go anyplace without him especially since my Mother passes this May. I think that effected him more than me. The first time I left him with a sitter, he was furious and she said he told her I wasn't coming back. She told him, yes I was and he argued with her and later he kept wanting to know when I was coming. I tried talking to him, telling I needed to get out myself occasionally for a few hours and Becky would do things for him. 2 weeks later when she came again, he was more accepting but he still help asking when I would be home.
I take him to Mac every morning for breakfast and do a few errands and he waits in the car for me. I think the stimilation of being out in the car is better than sitting at home. lmohr
Yup, and just like leaving the kids with a babysitter, it is not whether they want you to go or not, or whether they like the babysitter, it is knowing that they will not get into trouble because the babysitter is there and you need to get away from them sometimes.
flygirl..smothering..yes! That is exactly what I feel. I have been horrible today, and don't even feel much remorse. He has been worse, but of course it is my fault. I can't believe this is all the illness..some of this is by design,and so NOT the person I married. He isn't that far down the scale, I don't think even though it has been several years since the symptoms started. I guess it is the apathy that is mentioned in FTD that I notice. He doesn't really give a damn. My stomach can't manage too many more advil! And, I surely don't need any more vino which is the only thing that appeals anymore.
Enough..pity party night, I guess...thanks for the ears.
kathi, you are at the stage we were at last November when I realized that my husband had totally isolated me even though he wasn't sick enough for that to have happened yet.
Something snapped when he had a 2 day temper tantrum over my going to the library and being away for 20 minutes.
And because something snapped I started fighting my way out. I decided that if he wasn't talking to me, that was A GOOD THING. As long as he wasn't talking he wasn't saying bad things. I found another online support group and then this one. I called the Alzheimer's Association hotline after he went to bed and poured out all of my frustrations. I put myself into therapy. I started going out anyway. I began to say yes when people asked if they could help me. I went public with the disease and told everyone I could that he had dementia so they would figure out that I wasn't being stand-offish; I needed help.
And things got better. And he got used to the idea that I went places without him some of the time. And some people in my community figured out that I really did need help and started getting me some help. And...
Kathi 37,you mentioned an upcoming cruise. My husband and I have cruised for about 12 years. In the beginning it was wonderful. Last January, we went with good friends to the Carribean. It was a small ship,about 600 passengers. My husband rarely left my side. He did not want to go on tours. The open seating was a challenge. So was ordering from the menu. I found that ordering room service for breakfast was helpful. Our friends were great and still want us to travel with them, but, we do better at home, with our own routines. Or, rather, he does better. I long to travel, not with all the challenges we know face. Sometimes, I am overwhelmed, as I know many of you are. Maryd
I know it may be challenging, but I don't think (hope?) he is beyond this now. We will be totally alone, no friends or family, so shall see. This is a long cruise (transatlantic) so there won't be a lot of touring involved..it also is a mid sized ship 684 total. Room service is always an option.
Oh, I'd love to go on a nice cruise. I just don't know if DH is up to it or not. I'd sure hate to get out into the middle of the ocean and have him trip out on me. He loves to look at travel catalogs, especially Elderhostle,'but last October we were all set to go to Italy with a group; everything booked and paid for. About a week before the trip he said he wasn't going, I couldn't make him, he didn't care if we lost that money or not and on and on he went. Took me 3 months to get the $$ back. Thank heaven for trip insurance.
Now he says he wants to take a trip to Norway. Don't ask me why. I told him if he wanted to go to Norway, he could get on the phone, make the reservations, etc. and then let me know when we were going because I've been there and done that and am not doing it again. He doesn't say much after that.
Where ever you guys cruise to, I'm envious. Not sick with envy--just a little bit envious. :) HAVE FUN!!!
Kathi, think positive!") it will be fine, i took my DH to the mediterranean on a cruise in 2002 he did fine! you have cruise insurn so dont fret, divvi
Thanks, gals...at this particular moment I need your good thoughts...HE"S DRIVING ME NUTS! Does anyone else have a totally negative attitude person? Doesn't matter what or who...it won't' happen, it won't be ready, it won't work, they won't be there, I'm going and leaving you here (at this point I took his keys!). Been another long day...almost vino time..HUGE SMILE....
Outside of threatening to leave me, my husband has become totally negative in exactly the same way as your husband. Someone stole his rake. He left it in the kitchen. "They" (whoever they are) won't fix this or that. They won't show up for appointments. Etc., etc., etc.
I'm convinced it is the disease. It is a total inability to trust anything.
And if he aks me one more time why that thing outside is on (the air conditioner) I am going to go nuts. It is 80 degrees outside, that is why it is on. And it is staying on as long as it is hot outside. #@&^$#$$!!!
I think a cruise is the only type of vacation I might take with my DH now because he could rest when he wants to and I could read, watch tv, etc. We cruised to Alaska in May and he loved it. But, he has gone down hill since. I would only travel on NLC because of the eating arrangements. You eat when you want to and where you want to and by yourself if you want to. He would not be able to carry on a conversation every meal.
Yea..another evening with thank yous to all..we have mellowed out a bit..I'm trying very hard to be as nice as most of you seem to be. Our daughter is home safely from China.."interesting experience, won't repeat it thank you" so the stress level is lowered for all. G is asleep with no tantrums tonight, pup is tired and happy, mom is wiped, but no headache..how much better can life be? Hasta manana.