Phew! I am having such a hard time doing the AD thing - you know, never argue, never reason, never shame, blah blah blah. I find myself living with a junior high school mentality and it's all I can do to tolerate him. Of course, I'm not being Miss Tolerance, he irritates me and I tell him to shut up (under my breath, of course, but, miraculously, he hears me - he never hears anything else and I must repeat myself over and over and over again, but he hears me when I say something not nice). I'd like to divorce this adolescent, but, I know in my mind that he can't help what he says and does and I don't like him much at all these days. And, I don't like me, either. This person is bringing out the absolute worst in me.
Oh mothert...I hear you, that's exactly how it is here. this is so hard, Dh had a major meltdown yesterday while i was on the phone to a friend, she was so worried about me she could hear him, so she rang my daughter who was too far away, my Dd rang our son who was here in a flash, he calmed dh down and took him out of my hair for a couple of hours.. Same here, the worst is coming out of me too...i can't do it anymore, and i feel so guilty for that. . Today i checked out a couple more NH's for respite and to be on their list for placement..I need two weeks respite at least I hate this!
sisters in this this strange sad journey, I am with you in heart. When I think of how I felt just a few days ago, it is hard to believe that we do not actually "crack" sometimes. I do know, that it can not go that far every time, the stress, heartbreak, and madness.
All I can say is I hear you, and I lift you up in prayer, and for some help.
I cracked this weekend when balancing an account, which was off by $100 (never happened before), I kept asking DW to be quiet. After the 3rd request I just lost it and yelled at her to shut up. I felt awful immediately and said I was sorry. What was saddest was her lack of reaction, which was just an "OK". In the past she would cry about it hours later, this time she never mentioned it. Of course this all had to happen in front of my son, so I also set a bad example for him.
So you have my sympathy. Having the best attitude as a caregiver is very difficult at times and it brings out the worst in us.
I found that the best way to increase tolerance for my husband was to get away from him more. During the difficult times, there was a direct correlation between the amount of time spent together and my lack of patience. Don't wait until you are completely frazzled and a mess; find a way to use adult daycare, in-home help and respite stays early in the disease process. I started my husband in a day program while he was in the early stage--it saved my sanity.
You were/are so fortunate marilynMD, that you have the resources for the respite and the "getting away from him more". So many of us don't have that, so we deal with it as best we can. I can leave DH downstairs with his computer games for an hour or so - and I have my space upstairs. That's my respite!
paulc and mothert: My heart goes out to you - and all the others going through these trying times. God help us all!
Vickie--there are some free/low cost respite options available in many areas that have been discussed on these boards. Yes, I am fortunate, but the reason I had the resources is because my husband bought LTC insurance when he was in his 50's. I always encourage everyone I speak with to buy some--whatever they can afford--some coverage is better than none at all. (Of course, once one has a dx, nothing doing on insurance.) In my state, if one qualifies for Medicaid, then attendance at an adult daycare program is paid for by the government. Would that be an option for you?
Must have been the weekend for melt downs-sure had some here in WV. Today is better but I know the next one is never far away!! Vickie-it is great that your dh will still entertain himself for a while -mine likes to do nothing until I get busy then you can bet he will be doing SOMETHING. He is going to ADC tomorrow so I can get some yard work done.
Yes, I've checked the few options we have in our small, rural area. Cutbacks to medicaid have been severe, although we don't qualify just yet. If he were just a little "worse", perhaps we could get some in-home assistance, but he isn't "bad" enough! He will be 89 next week - and I just pray that he will go peacefully, before he gets any "worse". Actually, he does pretty well for being in the 9th year since DX. Mornings are good and we go out on errands and to lunch. Sundowning starts around 3 p.m. and he is in bed by 6 - sleeps all night until 6 a.m. Takes very few meds, BP, Sertraline, COQ10, vitamin and Tylenol. Is not incontinent, showers, but I have started shaving him if we are going somewhere. Otherwise, I don't worry about it.
I'm with you - if you can get the LT insurance - get it while you can!
Hmmmm, thank you for that bleak look into the future. I know that someday all too soon, I'll be looking back on these as "the good ole days." Enough to turn me to drink (more drink, that is :-)). Today is a better day, so far.
mothert, must be something in the atmosphere-DH is particularly difficult the last few days (has always been somewhat difficult since dx) but lately he doesn't respond to me t all-no matter what disposition I have. That's dangerous because the live-in aide is leaving for a 10 day vacation and we know nothing about the substitute.
Looking back, the adolescent stage is easier than the toddler stage (which we're now in). At least there used to be a bit of independence (for both of us). Now I'm dealing with a 5'11', 200lb brat who is frequently non-compliant.
My respite comes from work - escaping while DH is with one of his aides. But then reality hits when I come home ... seems there are always fires to put out.
I leave lists for the aides. The male aide doesn't follow them. I called the agency this afternoon to complain.
He took Allan to the bank. I expressly said he needed to deposit some checks. I filled out the deposit slip, endorsed the checks "for deposit only." I get home - Allan hands me an envelope with $1,000 CASH! So much for letting him do the banking.
And then at the grocery they did not pick up 2 things I asked them to get. The aide had it on his list. Just didn't get it.
So I had to run out, leave Allan alone for 20 minutes, deposit the cash into the bank, run into the grocery store ... UGH
How can I go off to work [and blessed peace] if the aide cannot follow directions and see things run smoothly? Makes me crazy.
mothert, my experience is with males aides "they don't sweat the small stuff". That's being kind. If he's from another country, there might be a communications issue (even tho you wrote it down) or it might be cultural-my experience is that males from countries where they are "heads of household", may or may not follow your instructions. DH's aide is wonderful, kind, resourceful and caring has difficulty understanding my directions sometimes and other times decides he knows better than me. We used to argue over it but if it's not life threatening or dangerous I calmy tell him we had a miscommunicaion and advise him that my expectation is that now we've discussed it, t won't happen again. Yes, I've threathen to replace him but so far there's no way I would hire one of the replacements we've had instead of the one we have. They'rs SO MUCH worse.
Yes it's frustrating but I've learned after almost 4 years with an aide, they can only do what they want to do. They often don't understand why we want things the way we want them. I know, I know you're not paying him to second guess you, just to execute your directions, but ive learned that many male aides don't see their jobs as making things rum smoothly-their job is to take care of your spouse with dementia, not to do errands you can/could do. They won't be overt about it, it's just not part of their job description.
Yes, he is from Haiti. But he is very polite, very soft-spoken. He is intimidated by DH. He wants to do errands - believe me, he hates being cooped up in the house with DH.
He knows that part of his job is to run errands - to do light housework, things that DH can't do on his own. He is not just a babysitter.
The female aide, from Costa Rica, is a whirlwind and never does so much to engage DH. I never have a bit of trouble when she is here. She leaves me lots of notes about everything they do. She will even take DH out to look at the ocean - just to get him out of the house and into the fresh air.
Our best male aides were from Barbados and the Philippines, so I am not sure it's a cultural thing ...
Our wonderful caregiver that sat with Paul 3hrs 2 days a week has gotten a better job.So as she left us today we were all crying-Paul and she got along soooooo well and I could trust her with anything that came along. Now we have a new one coming on Thursday!!!!!!
Well, yesterday i called in at two NH's...put our name down on the list at the first one, but they do not do respite, I would have to go through an agency for that...no one ever told me that! Anyway, i have arranged to visit with my son and DH on friday to look around and see how they operate, I have a list of questions to ask them.
The second one i called into which already has our name down is a lot closer to home , is happy for us to visit and look around on friday also. I mentiond to her about respite, she said at this time there is nothing...i then added, "the 4 years i have been caring for Dh I have only ever had one weekend respite, I really need some respite"...she then said.."oh, i do have one booked in as tentative, i recheck and see what i can do, I'll ring you later in the week" Now if i hadn't said that she would have just dismissed me and i would have left very dissappointed...so fingers crossed that it will come to fruition..
It seems hard to find a place that does respite care. When DH was coming out of rehab last November and was bedridden, I started looking. He has so many complications - the MS being the main one, that keeps him in a wheelchair and unable to do things on his own - no one seems to have the right kind of place for him.
If I placed him for a week, I think I would either go visit family in Boston -- haven't been there in about 12 years - or fly somewhere fun with my older daughter -- Paris or Barcelona. It's nice to dream ...
ms. magic there are some small private facilities that are home like and seem to have younger people. There is one up in Ft. Pierce. Would you like me to check it out for you?
Sunday is the worst day for me. The routines we used to have- reading the nyt and enjoying coffee are long gone, since I can't afford the nyt anymore and even if- H has no interest in reading. Sunday night would be pizza and tv.
But more important than that, it would also be- tomorrow is Monday, and Monday means work!
It has been 2 years since H has been able to work. Those two years have not, for me, replaced as routine the 20 years he worked. The 20 years; one of my pleasures was making sure he had a different tie for every day for a month.
So, now what day it is really does not matter. It just goes on and on and on and there is no future.
Although I watch it, Sunday tv is especially difficult for me. Harry's Law, The Good Wife, Mad Men- characters who have interesting lives while I, well, let's just say- I don't.
ms. magic, sorry-I did mean to address my comments to you. Interesting that your aides are from different countries. The aides in the northeast are primarily from Africa (Ghana, Uganda mostly) or Jamaica and I have found most of them-male and female-don't like to take direction regarding what their duties should/shouldn't be.
bak, I'm sorry your losing yor wonderful aide-it is so upetting when you have someone you really care about.
msmagic a few tips. Sending a Haitian male grocery shopping is culturally women's work and he's most likely he's not familiar with all of the items or brands you want. Take thumbnail size photos of the grocery items that he may not be familiar with and note where they"re located, what aisle. Pride will prevent him from saying I don't know where to look for some items on your list Banking. open an accost with Chase Bank. All you have to do is download the free Mobile app take a front and back picture with with your phone or other mobile device and you can make the deposits right from home by sending the pic. Just transfer funds via computer to current account and you don't have to worry about changing scheduled payments
I love your comments, they make me realize I am NOT selfish, I am just human for wanting a little time to for ME. Me seems to get lost in thsis whirlwind we call caregiving. It sucks the life out of us and we are left with twinges of memories of the days we actually could focus on ourselves once in a while.
Nelsons, thank you for your post which clearly explains what I was trying to in my first post. The differences in cultures has a very real impact on how things get done.
If a Haitian aide -- or someone from another culture -- cannot perform the duties of the job, then he is in the wrong job. He doesn't come here to change our oil.
He's here to cook meals, change sheets, do laundry, assist with DH's bath, grooming, dressing, etc. (Are those "culturally" women's jobs also?) Grocery shopping and errands are on the list.
He signed up for it. He's paid for it. If it's "beneath" him, then he should be finding another job.
As I said earlier, we had a wonderful aide from Barbados and he did all of that and more.
I could easily fire this man and hire someone else who will do what he/she is being paid to do. However, I don't want to put this man out of a job. I know he needs it and even works weekends (for someone else) to make ends meet.
ms. magic Sometimes you catch more bees with honey than vinegar. I didn't imply "beneath him" my point was you have to educate him a little. He may turn out to be wonderful investment, or not. I assume your objective is a devoted , loyal, trustworthy relationship with this person with whom you've entrusted your dh's care to. If the investment of time and unerstanding which is reqired while training an employee to meet our specific whims and needs is too much for you at this stage, fire him. His short comings really appear to stress you and that's the last thing any of us need more of. An advarsial relationship doesnt serve you and certainly can affect his relationship with dh
It's easy, when you don't know the facts behind the case, to rush to judgment. Please resist. I came here to let off steam.
I work 40 hours a week. I am gone 9 hours a day - because it's a half-hour commute. I don't like to come home to put out fires, but it seems that is the way it is. It's always something, some kind of issue I have to take care of when I get home. When really, all I want to do is sit down, catch my breath and relax.
Many here have acknowledged that sometimes the little things can set them off. I am that way. It was just one of those days when a couple little things made my day turn upside down. I was angry. I was looking for some empathy, which I often find here from some of the lovely people who understand. I was not looking for a fix -- because a fix is impossible if you don't know all the circumstances.
Let's just say this:
The aide has been with us for about 9 months now. He is experienced and has worked as an aide for many years. He's been in the US for more than 20 years. He knows what he signed up for and he knows what his responsibilities are. [And as an aside, he took home the keys to DH's van and our house keys last night by mistake ... I searched high and low for them, then called the agency, who called the aide, who brought them back to my house.] The aide has already been trained - not to meet any "specific whims," but to do the job he is paid to do. I am not going to expect any less.
Thank you for your attempts at trying to provide a quick fix, but understand that it is not possible nor is it warranted.
Thank you to everyone else for understanding my need to rant some days.
Rant away, ms. magic, that's what this site is for, along with other things! If I didn't have this - well, what would I do? What would any one of us do???
Ms. magic, I've been where you are and had to replace aides until I found a better fit. It's a nuisance, I know, but the better agencies want you to be happy. Nurse Next Door is one agency I would recommend if they are in your area (I live in Canada). The owner was a nurse who had a mother with Alzheimer's, and the nurse-owner ran into the same kind of problems you've been having, so she knows first hand what it's like.
We are in South Florida and go through an agency in our town. We've had a number of aides over the last dozen years. Some want to sit on the couch and watch TV -- they never last long. We had one man in his early 70s who was awesome, but he retired. He was with us for 3 years! Another one was a young man in his 30s, who was with us 2 years, but he ended up with congestive heart failure and had to stop working. Since he left last year, we've had people come and go until we ended up with the present ones.
ms. magic I am sorry your having a problem with your aid. It's sad to say that the quality of help is a very difficult task........and yes after working 8hours and commuting your tired, very tired and your life has no rest!!! What hours does your aid work? And after 9 months and they aren't performing to what you need ..............to much to handle I am sure. Is this a private hire or agency? I had NO luck agency wise. My is a private pay and every day my hubby has an issue. Unfortunately the issue is she's not me and I have to work. So I know what it's like to come home and listen to "that B**** I don't trust her" "she does nothing all day" and then the next moment "she's coming tomorrow, right?" Micro managing home while working .........so exhausting. Hope you have a better day :) PS Rant all you want ........we understand.
ms. magic--I understand where you're coming from on the aide issue. I had aides for 4 hrs every day for several years. Most were great, but a few didn't fit the bill, so I told the agency not to send them anymore. My reasoning was that I had all the aggravation I could handle from Steve's AD and could/would not tolerate any from other sources. This not only included aides, but also friends/family who were unsupportive or negative. Do what you need to in order to get aides that you can depend on and that won't add to your burden. It's admirable that you don't want to put him out of a job, but I think the priority is reducing your stress level.
I just returned home from a long day of travel back and forth to Sid's pain clinic apt. and errands, checked in here, and saw this discussion.
Oftentimes, when we come to the message boards, we are in the highest stress level, and just want to vent, which I believe is what ms. magic needed to do. Also, it is important to remember that without facial expressions and body language, it is easy to misinterpret the intent of another person. I have read through Nelsons' posts, and do not find them condescending or judgmental.( I deleted only one of them that was iffy.) I find them "male" oriented, and by that, I mean that when men hear a problem, they want to fix it. When women hear a problem, they want to offer support/empathy. This is NOT a judgement on anyone. It is a fact of nature - our brains are wired differently.
I'm not replacing the aide so fast. He's only 3 days a week. The other aide is 2 days a week - and I shoulder the responsibility on weekends. The 2-day aide is awesome and works so hard - but she has a 5-day job at a nursing home, so can't come work for us additional days.
The agency manager had a talk with the male aide about having more control of DH, following through with instructions, acting responsibly, etc.
@ Terry: We go through an agency, which bills the LTC company directly. The aide is here 6:30 a.m.-3:30 p.m. You are so right about "micromanaging home while working."
@ Marilyn: Reduce stress level? LOL Can that actually happen? It's not to the point I will fire him, but if this continues, that will be my only recourse. It means starting from square one, which is always hard on DH. And the next one could be worse! We let one man go after a couple weeks because he was just so uncommunicative and DH did not feel comfortable with him.
I know many of us find this a wonderful place to vent. It's a safe place, where you'll find positive feedback, understanding, caring. Love the hugs too. No judgment. No criticism. No meanness.
In our lives, sometimes something so insignificant happens that can set us off. It's that proverbial last straw. Yes, it may seem ridiculously minor in the scheme of things, but when it happens, we may have had enough and it put us over the edge.
I recall ranting before [in another place, another time] about DH's sudden obsession with postage stamps. It was driving me crazy! I'd no sooner get a book of stamps then he'd take them from my desk and do who-knows-what with them. So I'd have to go buy more. [I know someday I will find his stash and be glad they are "Forever" stamps!]
I had to rant about it just to get out my anger at this damn disease that has taken a very logical, very kind man and turned him into a stranger. I didn't want/need solutions. At that moment I needed a hug and some understanding. It was about loss ... and not the loss of some silly postage stamps. About the loss of the husband I loved, the dreams we shared, the future that looked so happy.
Whether it's postage stamps or pee we're ranting about, we are here because this is where we are understood.
We all have breaking points. I remember one year it was changing all the clocks and gadgets with DST. My husband had always tended to that and now it was just another burden on me. Pretty silly to most-but not to me at the time.
I remember one year when I trained 9 difference care aides, and my husband fired every one of them. He wanted me to care for him and no one else. It was too bad because I finally had to place him. It can't be blamed on the Alzheimer's affecting his judgement - he'd always been a loner and didn't like to have people around.
@ Marilyn: It was kind of an ironic LOL. Not a rolling on the floor one.
@ mary75*: nine aides, oh my! DH has called the agency to try to fire this male aide a couple times, and they always know to call me. Then I call DH to try to talk him down, but by then he has forgotten he called the agency and is engrossed in TV or a crossword puzzle.