Why are caregiver needs so often treated like complaints?

Jessie, I had to smile when I read "throwing money away like crazy" just because you want to go to a regular restaurant. That's the Great Depression child talking. Surprised you're not using coupons at the fast food places :)

I shouldn't laugh, because my sig other and I do the very same thing. We won't eat out unless there is some realllllly good deal or we have a coupon. Last week we used the buy one, taken one home from Olive Garden. The weekend before we used coupons at Berger King :)

But I understand what you mean... I wish I had someone doing my grocery shopping because I dislike shopping... even though I am doing on-line grocery shopping, it is still the anguish of deciding what to get. I hate to cook, so it doesn't make it easy.

I would love someone to drive me to all my doctor's appointments... bet my blood pressure would be a lot lower.

My Mom will say that she and Dad need to go to the eye doctor this month for their 6 month checkup.... then I think, wait a minute, I haven't seen MY eye doctor in over a year. Or it is time to schedule their tri-annual checkup with their primary doctor, wait a minute, I haven't seen MY primary doctor is over a year.

Jessie, the elderly are resistant to change of any kind. I'd make sure I take myself out to eat at a real restaurant from time to time, either alone or with a friend. Caregiver, care for thyself!

its just not an easy trip . my mom lashed out at me several times in her last few weeks of life -- then i remembered her crying on the phone to me 15 yrs ago when dad was sick and hadnt long to live . he was being very difficult and remembering that helped me to discount her bitter outbursts . the outbursts were rare and actually trivial compared to the day to day bipolar i had to live with . men dont handle crying jags well . all in all it was hell on earth . im proud to have been there for mom but man it does age a person .. it also costs a fortune in lost wages that are never regained .
id still do it again , i think its a necessity and a proud calling . i live now with how i might have done a much better job but it sneaks up on you . one day your doing little things for a parent , then doing much more for what seems like an ungrateful parent , then a hospital visit divulges that the pita that youve been dealing with is actually advanced dementia and your parent will be gone in 6 months .
were not born knowing this crap .

Jessie, we had to cut out the restaurants where you get your own food, because my MIL wanders off if she is unattended. Poor Sis came back to the table last Monday and mom was no longer there. She just up and moved across the food court.

I thought it would be good if we put together a Caregiver's Bill of Rights. Then I looked on Google and saw others had already done this. So much of our attention can be focused on our loved one that pretty soon we can start ignoring our own needs. We can put off getting help to come in because they don't want anyone in the house. We can put off eating healthy because these things "aren't fit to eat." We can put off our own health concerns as unimportant compared to theirs. And we can put off stating what we need because we don't want to start an argument.

Dementia is cruel to everyone around. It isn't short term, so we spend years suppressing our own needs, whether it be as simple as where to eat or as complicated as keeping a job to avoid future poverty. We really can't expect a person with dementia to understand a bill of rights, but we can use it as a guide to keep from hurting ourselves.

Jessie, you have touched on one of the most painful aspects of caring for a loved one with dementia -- their inability to empathize with you and to recognize your needs and desires.

The desire to be served in a restaurant is pretty easy to fulfill. Go to restaurants without taking Mom. The desire to have our loved one recognize us as a person with needs and wants is not possible to satisfy. It hurts.

My husband and I had an especially equal relationship built on mutual respect. The way that dementia forced that to become one-sided was cruel. The certain knowledge that he would have done the same for me helped sustain me.

Are they speaking about needs or complaining. ALWAYS validate complaints , before you respond , say: “If I understand you correctly, (and repeat the statement and ask is that right)?” “

“Mantra means a sacred utterance, numinous sound, or a syllable, word, phonemes, or group of words believed by some to have psychological and spiritual power”

I now have a new silent mantra, validate. I try to use it when I think someone is complaining.

Is a need a need or is it a complaint? Caregiver's needs are important, but not understanding about the need it is easy to see it as a complaint.

I wish you a sit down dinner with white table cloths, numerous forks and wine and water goblets. Let's throw in a particularly handsome waiter.

You need a break, any chance someone can sit with mom for an afternoon?

I do sincerely wish you the best.

Maybe you could "invent" a special deal or coupon....in some way, arrange to pre-pay the meal tab, or purchase a prepaid coupon (groupon?) Or claim you have won a free dinner or a prize and it expires soon, so you MUST use it, or lose it. Just make it seem like a great savings, or a free prize, she will be delighted at the "freebie".
Only problem is you can't do this one every week.
I too have similar problem (mom doesn't want to go nice place for fear they will see or hear her Depends. .....).

I think that part of the issue for all of us who act as caregivers to our parents is that we're used to interacting with them as though the are adults who can take the perspective of others. Sadly, with dementia, this ability seems to disappear so that our elders become more and more egocentric. We have to be careful to take care of our own needs, and not seek their permission or blessing to do so.

samara, you hit on what I think is the primary reason for what my mother does. Her comfort zone is getting smaller as she gets older. It is not the money at all, since that would not be a problem. We used to visit three restaurants regularly, with an occasional trip to others. Now she always prefers this one fast food place (Arby's). I think it is because she understands the bathroom there and knows where her table always is. Then I take care of everything and bring the food. It's comfortable to her, so I go along with it.

I wonder if your Mom really just doesn't like change and doesn't trust others? When caring for my Mom, it was often difficult because this lovely lady suddenly was worried about money all the time -- and she had plenty. Something happens when they lose control of how they live.

Sometimes, it is not about money but more about her sense of security. :(
She's protecting what she can -- and may not be able to tell you that.

And -- maybe you just say Mom -- I have to check it out and I'd love for you to come with me. Come On -- we'll have fun doing something different. and then just go.

I agree, hope. It is fairly easy to understand when we look at what they do. At the same time we also have needs, especially when we ourselves are in our golden years. If we spend so much of our lives taking care of them without being able to get away easily, we have to make sure we are taking care of ourselves. That is why I was talking about a Bill of Rights, if only to make ourselves realize what we need. As it happens so often, our loved one sees only their need and we begin to see only their need. Everyone else around becomes focused on the needs of the parents. It is easy to lose ourselves if we don't address our own needs. It becomes a hassle to do this when anytime a need is expressed, it is taken as a complaint, mainly I'm sure because it is not what the person wants to do.

HI Jesse,
Believe me, I KNOW!
When I cared for my parents, my brother was zero help. In fact, he would yell at me because I wasn't getting everything done in the way he thought I should.

Because I couldn't get him or anyone to help, I finally called him and informed him I was taking a month off and he had to help during that time. It was calculated because he'd ignored the whole situation for about 10 years of progressive needs on my folks part.

After an awful episode, where I was also trying to plan a very small and simple wedding for myself, my brother was so horrible that we cancelled the wedding and had a very private ceremony out of state. Private as in the minister, the concierge for a witness and the photographer.

What did my brother do? He came back with saying he'd taken over because I couldn't handle it. SLAP IN THE FACE -- I just wanted a little help and a little respite, which he was unwilling to provide. Did he help any more? No, he had his secretary handle things.

Jesse, what I meant in the case above was that sometimes the way we phrase what we want when it comes to asking the parent to change is how we get the best of both -- what we need and what might make them happy -- plus time together.

Artful manipulation, perhaps?

Ah, but then there's the question if we should spend our lives being manipulative and walking on eggshells to get even the smallest thing for ourselves. If it were a month or two, it would be one thing, but when it is a decade or two, it is not a good way to live.

Mom and I went to IHOP yesterday after her doctor's appointment. We had a $25 gift card, so what better opportunity to spend it. We got there about 11:00, so had plenty of time before the lunch crowd came in. Mom had to go to the bathroom when she got there, so I waited at the table. I check her every few minutes to make sure things are okay. The waiter keeps checking with me to see if I want to order. 11:30 Mom is back at the table. 30 minutes to pee! I think the waiter has given up on us by now, and other people are coming in. Then he dumps someone's plate on their table and has to take care of it. He scoops up some of the mess in his hand. He still had it in his hand when he came to our table. I ordered, thinking about that glob of food he was clutching.

20-30 minutes later the food arrived. It was delicious. We were even able to pack doggy boxes with enough for dinner. Yea! No cooking.

Tell your mom you have a 2 for 1 meal (one is free). I do this with my mother at times. It makes the depression generation more likely to go and enjoy their 'free' meal. Then you can enjoy your 'free' meal too... hee, hee...

Self-care is really important, and in caregiving, that's where self-care gets neglected the most. It's human nature to sweep aside the needs of a caregiver when she starts to open up; give yourself a pat on the back, first of all, for caring enough about your mother that you'd sacrifice yourself for her. Understand that if other people don't know how to validate your feelings, it doesn't mean that you don't matter. Be willing to make some changes so that you don't burn yourself out.

Everyone just gets so used to YOU being the one handling everything. It's not just the person you're caring for, it's siblings, friends, everyone. My only suggestion is to 'sneak away' when you can. Make up something about needing to run an errand, or leave town overnight, but really, go to a movie, splurge on a hotel if you can, or whatever you'd like. Since these people don't understand (and trying to get them to understand was wasted effort), I don't really feel they're entitled to a complete accounting of your time. I have done this over the years, and it's not the perfect solution (because of course, we feel naughty and guilty!), but it helps.
Heart2Heart - the 2 for 1 deal idea is great!

Here's a quick link for caregiver's to read about taking care of themselves....

Jessie, it must be the fact that we are caregivers.... as you know, I am a paid caregiver and when I go on a job, it is as tho I am a robot with batteries that never wear out..... I have been working 12 hour night shifts for quite a while now..... and keep in mind, this is how I make my living..... and on this job I am making way below average salary..... I needed a job, they needed help..... but I did not ask enough questions on the phone, never would have gone to the interview...... I was just coming off a bad situation with my last family and was not thinking clearly.....no excuse, just the way it was....

The job started out as 60 hrs a week..... after 6 months of that I told the daughter I just can not do those long hours..... I rarely disclose my salary on here, but was only being paid $8 an hour....I did finally get a dollar raise..... but these hours are killing me.... my charge had LBD and has some very rough nights.....and her husband is fussing and complaining the whole time.....

Two days ago I told the daughter I was looking for other work..... I would not leave her in a bind, nor put myself in one.... she got very angry.... made it very clear to me she would start looking for my replacement immediately.......so, if she finds someone before I find work, Im just out of luck.......

All because I stated my NEEDS..... so it is not unique to family members..... I am a lot more disposable than a family member, regardless of the care the family member received, no matter if my back hurt, no matter if I cant take off to see my grandchildren..... just like what all of you experience.....

I am going to look up that Caregiver Bill of Rights...... people tend to think because I am paid, I have no rights.... like a descent living wage..... I tried to tell them in most all businesses the night shift gets paid MORE, not LESS...

So, yes, Im a little anxious now.... thought I was being professional by letting her know, but now that I wont be at her beck and call, I am disposable...... it must just be a CAREGIVER thing......

Crossing my fingers that you can find a new client quickly. I can understand why the family is upset. It is so hard to find good, trustworthy help. I know they dread the search. It would have been nice if you could have come to terms with each other -- few hours and better hourly pay. It is ironic that caregivers can be so appreciated, but so undervalued. I would say that even an unskilled caregiver deserves $10 an hour plus benefits. A skilled one would be worth even more.

ladeeM, I can understand what you are going through. For the past 3 years my Boss had Caregivers caring for his wife, who had Alzheimer's, and he would take advantage of the Caregiver's good nature. Such as wanting to have her work extra hours during the week, and to work all day Saturdays giving her only Sunday for her day off. He failed to realize that Caregivers had families, too. That school age children would be home sick. Oh, and let's pay the Caregiver minimum wage. I remember locked horns over hours and no time and a half.

I am at my parents' house around 5 days a week. The questionable 2 days are when they have a doctor's appointment that my retired brother takes them to so that I don't have to take off from work. My mom praises him to me that he helped her and gave her her meds, etc. IS SHE KIDDING?! I am the one who sorts out the weekly doses in the tray all he had to do was hand it to her not to mention that I do it at least 5 days a week! This is just an example but those with dementia just don't get it and we have to not take it to heart, although times like the one I explained can be tough. I hope you get to enjoy your meal and I hate to say it but I think you would enjoy it more w/o mom so you can focus on yourself.

I noticed that a lot of time parents will take the primary caregiver's help for granted and praise the one who doesn't help as much. Maybe it is because they don't expect as much from the other child, so any help they give is appreciated. My mother sees me every day and I do all the things around here. But she loves it when my brothers go out of their way to call her. I don't mind this, since it is really all they have to give. I'm glad they pick her spirits up for a while.

Another reason I don't mind, the way things are, is that my mother won't be around anyone without me there. If anyone comes to visit, she wants me there. She raises Cain if I tell her I'm not needed. She is afraid to be around anyone -- even her own family -- without me there. I can get off by myself if she is alone, but not if someone is there. Totally backwards to how it should be.

I understand. Everything is backwards! My mom does praise me at times, but it is true, she is so used to seeing me and everything that I do, that it's the others that pop up they seem so appreciative of. But I know what I do for both of my parents, as I know you know you are doing right by your mom, but there is nothing wrong with us wanted to feel appreciated and get a much needed break at times too! I always tell my friends that I am not complaining and I am happy to help them. Your initial email caught my eye b/c I am conscious when I vent to friends that they understand, that I am allowed to do this but it's not a complaint. Fine line....unless they have been in this situation like everyone reading this but most haven;t

I can relate to the line about things getting to a point where people forget we exist. I think I even forgot that I existed and that I was a "real person". I felt like I became an extension of my parents, a tool for them to get the things done that they wanted done. I did whatever I could to keep things going smoothly. I look back and wish I had been more knowledgeable, more prepared. I agree with Captain, I'd still do it again.
I'm glad you found a way to have a nice meal with your Mother in a down restaurant, you deserve it!

I guess I'm lucky that my mother will usually offer to help out with the bill, but we rarely go anywhere fancy.
We went to a fast food place drive through today and when I got up there to pay, the cashier told me that the car in front had already paid for me. First time ever - it made my day!
Tell your mother, 'Mom, you know I try to do anything I can to help, but there is so little pleasurable events in my life that it would be nice to get waited on now and then.' My mother never hesitated to use guilt when I was growing up, so I turn the tables on her. Pour the guilt on really thick. Don't feel bad about it either! You deserve it. Keep those Applebees and Olive Garden coupons and USE them.
I have learned that I have to hit my family over the head to make them empathize, and I am learning how to do it. It breaks my heart that I have to do it since I feel that there should be some thoughtfulness for your own family member, but...

And, doggone it - I'm hiring a personal shopper this week to help me, too!

Jessie, I don't think for one moment the daughter was upset that I was leaving.... I have never heard from her one way or the other if she was pleased or not with my work..... she already has someone else..... and I am now working in a hostile environment...... and being ignored...... good thing she is only there a short while after I get there..... the other person hired has agreed to wait until I find another job.... but I know the girl, and she understands the situation.....

So, who knows how this will turn out.... I just know I will keep my dignity and remain professional..... she can ignore all she wants... it would be very different if I cared what she thought.... I don't... just as she never cared if I was adjusting, having any problems, ect.... feel bad for the new girl...... but it is what it is.....

I hope you find a job working 40 hours a week making at least $15 an hour with a nice client who will think you're the best thing since chocolate.