I guess I need to get this off my chest. I haven't posted it since it seemed so trite compared to what others are going through, but it has had me upset for several days.
On Wednesday my son called, he too has a rental property here, which I managed for him for about 5 years up until last year when I was overwhelmed with all that I've been going through. Old friends who are real estate agents took over the management. Anyhow, he told me there was a 15 day gap between tenants, and could I please have the utilities turned on in the interim in my name. I didn't ask any questions, knew he was busy at a client's location, he's a computer systems engineer, travels often globally.
I spent the better part of an hour holding.........for the next available operator. Finally got the utilities switched on. My husband asked how my son was doing after he called, & I told him all about having to get the utilities turned on.
Next day I awoke to the phone ringing & asked my husband who it was. Someone from some utility company, he told them to call the real estate agents. (Of course, giving no contact number.) I was furious. Yes I got upset. I asked him, don't you remember I told you yesterday I was having the utilities turned on in my name? Absolutely no recall. He said, you NEVER told me about that! Why are you getting involved? What is he paying them for anyhow? (I never charged my son for managing it.) I was so frustrated! I asked him, was it the electricity, water, or gas? He didn't know.
I looked at my phone for the last caller, called & talked to the electricity people. At first she was hesitant, because my husband had told her it wasn't my house. They call & confirm each request. I finally had to say, my husband has Alzheimer's. Now that is a first. I know he has dementia brought on by the radiation to his brain, but AD is easier to explain. The conversation turned around, the woman had a friend whose mother has AD & was totally sympathetic, told me it was worse for the family than the patient.
My point is, I wouldn't have had to "fix" this had he been functioning normally. It's just one more of the daily frustrations that build up over time to the boiling point.
I guess at some point I will have to get my own phone. I haven't told my friends about this, it's just one more thing, small, but so irritating. I can't keep going to my friends & saying, you won't believe what he did today. I know that has to get old.
I was astonished at myself for having to tell someone there was something wrong with my husband. It made reality all too real.
Val - I can relate to what you are saying...I really "hate" to tell people on the 'outside' that my husband has Alzheimer's, but there are times it is absolutely necessary. I have to handle all our "stuff" and our insurance is in my husband's ssn and name because he retired with it...they always wanted to "speak to him" to verify that I was allowed to be calling for him...they would ask him his DOB and SSN & sometimes he knew it, but sometimes he'd just "stare" @ me...i would always have the 'speaker phone' on so I could hear the questions & after many times of trying to "cue him", I just decided to "tell them"...they wanted a letter & copy of the power of atty, etc. Even now, they STILL ask me 'and it is okay for you to be calling for your husband'...it is irrating to me, but sometimes i do have to just say "my husband has Alzheimer's". On an airplane this past May I had to try to help him in the restroom & when I came out the 'male' stewardess said "miss can I help you with something"...it really peaved me so I just said "no, my husb has Alz & I have to help him in the restroom, but thank you"...later as he came around with 'snacks', he just looked @ my husb & then @ me & smiled softly. I just don't think some people "understand" about Alzheimer's...I know I wouldn't if I were not LIVING it 24/7. I am glad that you got to tell someone who was "familiar" with it first-hand, because that was surely a comfort to you having to tell someone the first time. Hang in there!
I also can relate to what you are saying. After we moved, I called to have the address changed on my husband's retirement checks, the checks are direct deposit, however, the copies come in the mail. When speaking to a representative I had all the information they needed, but they wouldn't change the address until they spoke to my husband. I explained he had dementia & probably wouldn't be able to answer their questions without my help. Still no go, they must speak to him, I put him on the phone, of course he couldn't answer any questions & since they could hear me in the background prompting him they wouldn't not change the address. I finally, decided I would go on-line set up an account & change it. Then one day after calling in a prescription, for Namenda no less, the Pharmacist called back asking to speak to my husband, I explained he has dementia & wouldn't be able to understand what his question was, he ask me if I had POA, I didn't at the time, however, lied & said yes. Then he went about telling me they did not have enough Namenda to fill the complete prescription. What is really tough sometimes is when my husband runs into someone he worked with, he always remembers their faces, however, that's all. They ask him questions, he really doesn't answer or says something that has nothing to do with the question, I can tell they are trying to figure out what is going on, most just walk away. That is one problem with early dementia, most people look fine or at least my husband does.
Don't know if this will help. But, I have had the same problems more or less. I have put our phone number and my DH's SS# on a little piece of paper and taped it to the phone so if he needs it...there it is.
When all else failed, I would have my son call and pretend to be his Dad.....there was no way I was going to jump thru hoops and get copies of papers to a utility company....give me a break...who was signing those checks all those years so that they got paid...ME...!
also if you have POA (or not i guess?)you can either get their own forms for 'changes' and just fax it in, or just write a letter to them with the changes needed and 'sign' for them and send a fax requesting the info be changed. i will never talk to another live agent -its so fustrating when the spouse cant give the right info THEY need to hear. been there done that. divvi
I agree with divvi ... do things over the internet or in writing, sign for your husband or wife. Too many companies either refuse to recognize your POA or claim you have to use their own particular form. It just adds to your aggravation and frustration.
Agree with divvi - just go ahead and do it. But also be honest about the AZ to people; so many know people they're very sympathetic and helpful. You know how you can get off telemarketing EXCEPT for charities? I've learned to say to charities, rote, I'm sorry I'm dealing with serious illness here. Please put me on your do not call list. CLICK. Because if HE answers the phone, lord knows WHAT he'll promise.
Sandi - I have many times wished that I had a son to do the "sounding like dad" trick for me. We used to use that for my father-in-law's needs & my husband would be the "elder"...but then he couldn't do that any more either.
Judith - I think that's a great idea about keeping the DOB, SSN, etc. info handy, IF they can read & repeat what they are reading. Sadly, my husband cannot read numbers any longer. Sometimes he does know his DOB...most of the time, not.
Kadee - I too ran into that "meeting someone in the store" that husb used to know & he "knows" them, but not enough to carry on a conversation...I found that if I introduced myself as his wife, then I could "help" carry on the conversation since we BOTH worked for the phone company before retirement. We went to a funeral recently & there were MANY there who knew my husband & 'suspected' something was wrong -- it was obvious because he wasn't his normal friendly & very personable self...like you said, my DH also "looks" great! It helps to have a shave, shower, hair dry, etc...wink...wink...But they don't know that "he's" not doing all that getting ready stuff any more...they just see the "final product" and can't quite figure out the rest...it's sad really....and I just don't have the heart to "share" at those times...I figure they'll find out from another source if they ask around.
You know, I have used the My husband has AD several times, I find, somehow it helps me accept it. The first time was Jury Duty. I was to go to Jury Duty in Downtown Manhattan from my home, 50 miles from New York. by the time I took the RR, and the subway it was 2 hours. they called me up to speak, and by then I was totally frazzeled, thinking how long he would be alone, so I told the woman. She immediately excused me, Didn't even ask for proof. But I have done it at other times, just to make the situation go away, and it works. For some reason, I always say Alzheimer's and never Dementia. We all have our quirks.
I've been worried about Jury Duty. Actually you probably could do what I did in California when they called me at a time when I was so disabled I was home from work and could not walk. I wrote them a letter explaining my situation. I offered to get them a doctor's note if they wanted one. In my case they just postponed it 6 months and by that time I was back to work, and using a cane, so I went in. They didn't have handicaped parking, and I almost did not make it into the courthouse or back to the garage which was several blocks away. If I had realized how far away it was I would have asked to be excused again on the basis that I needed handicaped parking and they didn't have any.
But in the case of our LO or ourselves as Caregivers, just include the doctor's note with the letter. It is possible they might want you to come in anyway so they could take sworn testimony, but bring the doctor's note with you in that case.
I got called to jury duty once and i wrote on the summons to send back stating i was sole caregiver to a disabled spouse. no questions, i havent been called since. divvi
Maybe it's different in California, but the summons has a section on the back where you can explain reasons why you are not able to serve. As divvi says, if you state there that you are the sole caregiver for an AD patient, that takes care of that. I did not have to include any proof -- you have to swear that the information you are giving is true, and apparently that's all they need.
There was a section on the back, but I was told by an attorney that if I included a letter in addition to the simple signature, I was more likely to get what I wanted. It was just a half page of clear information, but it was more than I could have put on the two lines they provided.
I don't think it is all that different in any of the states. I was once excused because I was the stay at home mother of a 7 year old with no family living in the same city. Not too different from the situation we are currently in.
It's funny, when it happened to me, he was in the earlier stages, and I was more concerned about the time I'd be away. If they had called me closer to home I probably would have served. they didn't ask for a dr's note of for me to swear, she accepted my word and sent me home. There are many reasons why we do have to share the information about our LO, but that was one time that it was to my benefit, as well at his.
If anyone is concerned about jury duty, there is a discussion at the bottom of page 16 of these boards titled "AD and jury duty". You may find worthwhile information in there on that subject.
I just found this site. I was on Daily Strength and someone suggested this link. It's very good and I really do like it. Also, I've never done a blog before. Something new every day! The first time I told a clerk my husband has AZ, I was very nervous and felt like I had to apologize or something. I was so surprised at her response. She said "I figured it was something like that. My mom had it and I recognized the symptoms." I think more people recognize this than maybe we thought.
It may be very true that others recognize the symptoms. I think it's also very true that we get used to so much on a daily basis that we don't always see how our folks have changed.And how their behavior and maybe expression are so different and maybe "off." We had friends in for a few minutes last night and I could see my husband couldn't follow the shortest conversation and couldn't make eye contact. He was so slumped in his chair and although not watching TV, he also kept it loud. And this was when he hadn't seen a dear friend in a long time. Not too mention his other manners. Yes, I think it is very recognizable.
..recognizable, more than, say, breast cancer, or prescription drug addiction... or some of the other conditions that our society has looked away from in the past and now MUST see, to engender support. Losta interest in avoiding AZ, but not so much in how to handle people once they've got it! It's getting better, I agree.
I felt strange the first time I said it, but now it is no problem. I tried not to say it in front of her, but there have been several times now when I have talked to a waitperson or clerk or whoever quietly aside. You would be absolutely amazed by the kindness and helpfulness of people, and I am glad I do it. Some other post mentioned that they felt like they were treated like they had a communicable disease. I may have gotten that a little, but by and large I have been totally grateful to people who have been nothing but nice and will go all out to make sure you have an easier time. I can't be a Joan, but every time I talk to someone to let them know how to help us, I consider it my little part in educating the world.
Let's say you inform the salesclerk quietly. When your LO does something strange (or you seem like some sort of control freak for telling them to stop doing something!), then they understand and you are not embarassed. Not only that, let's say the clerk goes home and hears about AD research on the news. They remember the encounter with you, and they understand just how important the cause is. When you put a face to a disease, it makes people want to help, not just brush it aside.
Not to mention that if you have already informed someone, it sure is better to have an ally should your LO get lost, or shoplift (I'm talking by ACCIDENT, of course!), or whatever. I had a confrontation with my LO who wanted to leave the parking lot at Wal Mart WITHOUT me. It would have been easier if I had explained to someone in advance my situation!
I would NEVER talk about my LO's condition in front of her, but I am all for educating and making trips out easier. Tell. You'll feel less alone, I promise.