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JessieBelle Asked September 2014

Why are caregiver needs so often treated like complaints?

My mother and I go out to eat each week after church. We normally go to the type place where I order, get the drinks, then bring the food to the table -- you know, fast food style. I told my mother that today I wanted to go to a restaurant that had waiters, so we could just sit down and enjoy. She started talking about the expense and the cost of tipping the waiter. These costs were pretty trivial to me, but she saw no reason for "throwing money away like crazy." I let it drop, because I could tell it was headed toward an argument if I said anything.

But I thought wouldn't it be nice to have someone waiting on me every now and then. I knew my request was not unreasonable, just that she was comfortable like it is now with me doing the serving. We don't even have to tip me.

It did bother me very much that I had expressed and need that had been taken as a complaint. Caregivers still have needs, but they get put off so much that soon others forget they exist. This sounds trivial, but I have the feeling that we caregivers go through this a lot... and soon we learn that our own needs are not important.

BarbBrooklyn Sep 2014
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!

lsmiami Sep 2014
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.

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JessieBelle Sep 2014
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.

jeannegibbs Sep 2014
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.

samara Sep 2014
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. .....).

BarbBrooklyn Sep 2014
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.

JessieBelle Oct 2014
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.

Heart2Heart Oct 2014
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...

freqflyer Sep 2014
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.

anonymous158299 Sep 2014
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 .

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