What's next? I got a call from the Dr. in charge of the drug trial yesterday, who informed me that DH could possibly be disqualified from the trial because he had encephalitis as a teenager. This after we already went down there several times (over an hour drive each way), he had an MRI and a lumbar puncture, and his first injection. Arrrrghg! The Dr. acknowledged that this was their oversight. He's going to try to keep DH in the trial based on the fact that it was viral encephalitis, not the auto immune kind. (Apparently, the vaccine can cause encephalitis, but it's the auto immune kind.) It's still discouraging to have this hanging over us now. I have to sign a release and they have to dig up medical records from 1970! Who knows how long that could take? I don't think he'll be disqualified, but I feel like I just don't know how I'll handle it if he is. It would be a major setback.
I'm arguing with my sister too. The kids run wild when they visit my sisters, and they just built a brand new house, so naturally they're concerned about things being damaged. (They've always been so supportive with taking the boys when I need them to) I know boys will be boys, but they go way overboard, running wild, not listening to adults, except at school, where they're great. I have the same problem, but I count on my sisters being able to take them for periods of time. Now I'm worried that this is in jeopardy. They're getting older (9 and 7 now) and harder to handle. I started back in therapy with them, but I don't know how that will go. They're so charming with the therapist, and I have a hard time describing these struggles. The therapist wants to get DH involved too, naturally, but I don't know if that will do much good. It's tough for DH to follow up on suggestions at this point.
Sorry, I know this is outside the realm of this discussion board, but I just needed to vent. I hope this week will go ok. I'm trying to get DH into a day program and go back to work next week. A lot to do in the meantime!
Frustration is NOT outside the realm of this discussion board. It IS the discussion board. We're all frustrated at one time or another about our spouses' behavior, their doctors, the drug trials, family, "friends". EVERYTHING!
It is especially difficult with young children at home. It is very hard for them to understand and cope with AD. Look on the left side of my website, and click on Alzheimer's Articles of Interest. Scroll down that page, and you will see a list of articles under two topics - EOAD and Helping Children and Teens Understand Alzheimer's Disease. You may find some information there that will be helpful to you in dealing with your children.
That does add fresh anxiety to the mix. Jeff just got his first injection of the vaccine (or just the adjuvant, or just some lovely saline...who knows?) today. Our biggest hurdle is that his blood pressure doesn't like to return to normal levels as long as we're in the medical setting, so I'm going to have to keep taking it at home as supporting evidence that it's not always high. Trouble is, in the past year his tummy paunch has expanded, his cholesterol and triglycerides have gone up, and he sometimes eats too much ice cream. So it may just be that I'm going to get high bp measurements too. I hope that it will not mess with our vaccine trial participation if he just needs a higher dose of the bp med or something. Today he's just exhausted, because of 2 rounds of mini-mental testing. As for me, I'm feeling reasonably comfortable that I'm ok since I still remember: John Brown, Chicago, Market Street, and 42. And I know how many quarters are in $6.75.
Wow! How many quarters are in $6.75? That's a challenging question. I don't remember that one being on the Mini Mental Test. DH gets asked to count down in 7's from 100 and can't get past 93. Today, when the director of the day program visited and asked him the ages of our kids, he couldn't even get that, or where he grew up. He knows a lot of these things, but seems to go blank when he's in this "testing" situation. Test anxiety maybe? It's hard...I'm never sure at what point I should jump in and provide the answer. Anyways, I was struck today at my need to tell this lady what DH was like before AD. I keep wanting to tell people "You should have known him when I met him." He was so smart and sharp and lively. I don't know why I feel the need to say this. I wonder if anyone else does this?
Yeah, there's the standard mini mental (I'm VERY good at counting backwards from 100 by 7's by now,) and he always gets that test. For purposes of the study, there's another different set the NP does which included the $6.75/quarters problem. It was too hard for him, but I think he came close...like 26.
Yes, I wanted others to know my DH 'before AD.' I devote several pages to that in my book. He manufactured small parts for the communication system in all the early space shots. When you heard Armstrong say, "One giant leap--" it came thru a unit he designed. And he was handsome, too. God, what a waste!
I just look around at the house--the gable cedar shingles he installed in a diamond pattern here, and stripes there. The built-in oak bench in the entry hall, with inset dark wood, in alternating grain patterns, and gradual changes in color intensity. The Arts & Crafts mirror he built in the bathroom. Now he can't install weatherstripping.
yes... theres not a day goes by I don't say to myself Why us,Why me.........We had everything. Nice home, nice cloths, nice jewelry, nice everything... We wanted for nothing.. I have motorcycles, hot rods, sporting equipment anything we wanted................ and now I help with showers , wash her hair, help pick clothing to be worn, do laundrey and all the other things that we all end up doing because of this s....t journey.....Am I frustrated ? ...F--- yes....... Mostly for what was taken away from both of us, and the fact that NO-ONE will ever know but us on this forum, that live with this disease and what we all go trru from day to day............................WOW! I feel better now Thanks Joan for this site, cause this IS the only place that will understand.............. Dan
I was driving home from work tonight thinking I don't remember what it was like to be in a normal relationship anymore. Yes, I am very frustrated. Life as I knew it with him is gone. I do go through periods of time where I feel sorry for myself for not having my husband anymore. But I mostly feel sorry for him. He got cheated out of life way too young.
I woke up today to an ironing board with the iron laying flat on a pair of jeans that he was ironing patches onto like he used to. Only the bad thing is he left the iron flat. Thank God the iron turns itself off in that position or it could have been bad. I had to tell his in home care giver to supervise him a little more closely. Part of me wants to be home with him all day. Who is home all day? Is that worse than working?
I'm home all day ........... And I'd consider it a real treat just to get to go to the store alone..... And going to work would be like a vacation/respite...
Yes I am home all all all all day after working for 38 years. Mixed feelings! My quiet days were at work. Time to revamp my mind. But no, What was he doing , Should he be alone? No I need to be here but it is not like retirement! That is why I get angry sometimes! Is this what it is supposed to be like, HOME??????????? But I know he needs me here!!!!!!!!!
The last message in this thread is very old, but I NEED to do some venting too in the same manner. We retired in 2004 before I knew anything was wrong, although it probably already was. We moved across country from California to Pennsyvania to be closer to family. No one lives in PA, but it is close enough to New York City that we can see them regularly.
This is NOT the retirement I expected to have. We live in a 55+ community and once again I'm watching other people have a good time. That was the story of my life when I was a kid and my family wasn't "normal". It is the story of my life once again.
It is still early days for me with this disease, and I've got all of the caregiver issues: grief, loneliness, frustration.
I am on my way out with Sid to another doctor's appointment, but I do want to address your post. Sid was forced to retire in 04 due to AD problems, which we didn't know were AD at the time. We both ended up having to retire 5-7 years too early, so between the money issues and the loss of the husband I knew and the life we planned, yeah, it STINKS.
If I didn't have my job, I would be in the same boat you are in. I thank God that I am still able to work. I am looking into adult day care, so I can continue to work. It helps me so much, and not just financially. This is the week each year that we used to go to Jamaica with our best friends. We couldn't go this year, because he doesn't travel well, and gets too confused. I'm dreaming about being on the beach with a pina colada in a chaise under a tree listening to the Jamaican music! It doesn't curb my anger, frustration, or disappointment at all!
I tried to talk to my husband about seeing an attorney for estate and elder care planning in case "one of us gets hurt or has a health problem". He started yelling, saying that I was trying to talk him into being sick and that the only reason he got a diagnosis was because the doctor was trying to please me, and that he wasn't going to let me control him or his money, which I'm not asking to do. Then he accused me of talking to other people about his mind and told me that his son-in-law had taken him aside and told him there was nothing wrong with him and not to let me or anyone else tell him there was. I've never talked to his son-in-law about this so I don't why the son-in-law said these things. Yes - I'm frustrated today and worried and stressed. I'd much rather be sitting in a chaise under a tree on the beach listening to Jamaican music!!
YIKES!!! I'm with you on the frustration of others thinking there's nothing wrong with him and that it is ME. Check out my blog #29 in the "previous blog" section on the left side of the website - It's titled - "I Don't See Anything Wrong With Him". FRUSTRATION!!!!!!!!!
Frustration is when you are telling your close couple friends of 35 years who live in another state that he is progressively getting worse, and so when they come for a visit, he "acts" like normal other than he can't say more than 2 or 3 words, but he can smile and nod - they spent the weekend with us and proclaimed privately upon leaving that he seems the same as when they saw him several months before!! After they leave, all the energy he put into acting "normal" was shot and he was in a stupor for three days! Now they are inclined to think he's not as bad as I make out!
It happens with us all the time. Friends say "he seems ok". Also I notice when he speaks his gobbely gook to people , they are inclined to "fill in" words and sentences which will make the conversation make sense. He too smiles and nods and laughs when everyone else is laughing. However when we are in a group he just sits quietly as he can't follow the conversation at all. Today he went to bed at noon and seemed to sleep. I asked if he was tired or sick but he can't understand what I'm asking. It's important to know if he is sick as he has heart disease. Oh well!!
We went to Georgetown U. for an MRI today. Standard scheduled part of the vaccine trial. As usual, we got lunch in town afterwards, today at an Indian restaurant. Next to us was a table full of 6 friends/coworkers having lively and interesting conversation. Jeff and I, as usual, had very little conversation, because that's just the way it's been for the past several years. I listened to the other people's conversation instead, and wondered whether we looked like 2 people who just no longer have much to say to each other, which would be sad if both were healthy.
Sometimes, when we're driving somewhere, we can have ok conversation because there's stuff to look at and comment on. But pulling fascinating, abstract talk out of our heads, which used to be my favorite thing about going out to eat, no longer happens. He doesn't really start conversations except about "how's the stock market doing today?" (answer: crappy. don't ask.) And if I say something that's anything but simple and bland he'll just look at me kind of confused. So that, happy people at the other table who are interesting, is why we don't talk. It's not because of a failed relationship.
I know just what Emily is going through. For years my wife and I would have some of our best conversations when eating in a restaurant, just the 2 of us. Now, we just sit in silence with an occasional comment about the food or the weather. Fortunately, in this retirement home, we sit with others most nights so they hold up the conversation.
I too get tired of eating in silence. We used to enjoy dinners out together but now I only want to go out if we have company. I figured out my DH has a script memorized. He can make standard comments for quite a while making it seem to some that things are ok with him. But I've noticed lately that any new thoughts are difficult and he has trouble finding the right words.
So sorry you are going through the denial stuff with your DH. His anger about seeing an attorney and you handling things is so typical because he knows there is something wrong with him and if he does not get angry and lash out he might have to admit that he needs help. Just hang in there and continue to nag about getting the legal stuff done. Educate yourself on ways NOT to react and talk to the Dr. about bringing up to your DH about getting financial matters in order. Don't worry about what the son in law may or may not have said. Your husband might have made that story up. My DH used to say "My brothers don't think there is anything wrong with me." He used to say that over and over. I never went to his brothers to challenge this, but eventually I had a chance to talk to them and just ask their opinion. They both said the same thing to me.......that they saw all the signs too and were very concerned. Although they didn't say it, I think they were appreciating me more (as his caregiver and wife) because they began to realize what a job it was going to be to take care of him.
Take care of yourself.......I wish you could be in Jamaica too ( me also).
I presented the legal paperwork as something I needed to do for my own paperwork, so we might as well do his too. Because we hade changed states it was true. And Pennsylvania also changed the living will laws. The new ones are a lot more involved (in a good way).
If you have moved, if your children have grown up or married or had children, YOU need new wills. If your state has changed the living will laws, you need new ones. So you can present doing something about it in terms that BOTH of you need to take care of this.
I wanted POA over my DH & he, in turn, wanted it over me. So we had the same papers drawn up but added our adult son's name to each because I knew my DH would never be able to handle anything if something happened to me.
Sometimes I feel TRAPPED! I decided to volunteer to make calls for one of the political campaigns since there is so little I can do to volunteer these days. Saturday is best with free cell phone minutes. Hank knew I intended to do this, but was asleep when I started making calls. When he awoke he wanted to know what I was doing, why I hadn't told him I was going to do this, and then he started getting angry as he picked up on my frustration of "I DID tell you!" We are in a RV Park with close quarters and I just hate that neighbors could hear this...and I start getting more angry because I just want to do SOMETHING besides deal with AD. This is a terribly frustrating disease. All along I have said I would be better at changing diapers than having my husband yell at me! Thankfully, this doesn't happen often but it is exhausting to deal with.