Why do people always say, “I hope you and your parents are well.” Well!?! They know they have Alzheimer's and Vascular Dementia and both are in the late stages. It is so annoying. I feel like saying to them, “No! They are not at all well! They both have fatal conditions and are living a horrendous life at the moment, thank you.”
That is what I want to say or scream at them but what should I say?
Every dementia patient is different. I helped to take care of my mother-in-law and we really didn’t have too many problems with her. She was very quiet. I’m now taking care of my father who is a whole different ball game in a dementia journey.
Some people ask how my dad and I are doing and then you get the feeling they really don’t understand if they haven’t been in that situation. Sometimes it’s just better to say we’re ok and then just move on. Until they experience it themselves they will never understand the emotions that we go thru.
Or do you want help? I understand if you may not want help from THEM... but if you do, say, "Oh thank you... it's sooo hard and I need all the help and good wishes I can get." That leaves the door ajar for them to ask what they can do if they are so inclined and ...if they aren't, to not repeat that phrase. (Be ready with a simple task like a grocery shopping trip or a pharmacy pickup that you can turn over to them if they do indeed offer help.)
It will help you survive if nothing else.
Do you have anyone you can really openly talk about your feelings, needs, and frustrations with? Perhaps if you had a place to put the "screaming mimis" it would make it easier to fend off polite inquiries. If you don't have such a friend or family member a counselor may be of help to you. At least journaling your feelings, fears, and frustrations may help you carry less inside all the time.
There are levels to these things. Acquaintances just making polite inquiries can get a stock answer that is honest but not too revealing. "It's not easy on any of us but they are doing as well as can be expected". Period.
Closer friends get more details and perhaps can help. "We've had a rough week. Perhaps you could come by briefly and see us, I'd appreciate the company". If a few trusted people actually see what youre dealing with you may get better support or even some help.
And you need somewhere to put the whole honest ball of wax, for your own sake. You are under no obligation to either spill your guts to everyone or sugar-coat the situation. But having someplace to go with the raw overwhelming feelings will make it eadier to feel gracious to casual inquirers.
We're under so much stress seeing our loved ones decline with this horrible disease we can misunderstand someones intentions with conversations. Have you come to terms with your parents illness? I was very defensive until I accepted it and studied what this disease is and how it progresses. Our Senior Services offered a 10 week course on Understanding Dementia. I wish it was available for everyone because it helped me in many many ways.
I wish you peace of mind and tolerance. Stay strong.
And if one does respond honestly, how are they supposed to respond without pushing another scream button? If "I'm so sorry" is also annoying, what are kind inquirers to say in return? We cannot expect that everybody else "understand" exactly our individual sensitivities, which after all, vary widely from person to person, as this queue of comments demonstrates.
If what we really want is for inquirers to offer to relieve us of our caregiving tasks, feeling exasperation toward them does not exactly invite their help.
Please understand that I completely compassionate the exasperation. I just think that blaming kind inquirers is scapegoating them.
On the other hand I have two close friends who I’m in contact with and they NEVER ask how he or I am doing and that actually confounds me. It’s like they don’t really care. To me that is much worse than people who try to recognize that you have a LO who is not well.
Once my so called good friend said to me, "at least your not caring for him in your home." It was like she was discounting that this road was still hard for me. I snapped back and said "it is still hard, Jane!" In a not too polite voice.
NOTHING about this is easy for any of us. Those who’ve never has a LO with dementia have no idea and it’s ok to educate them. You could also say "it’s one of the hardest things either of us have ever gone through".
People don't know what to say so most often they will just ignore that you even have parents. I assisted my dad for 7 years and I was a 24/7 caregiver for my DH for better than 3 years.
I am now "remembering" that the butcher at my grocery is a caregiver for her parents and tries to work 1 week a month. And I was/am honest with her. There is only so much I can say, but I remember to ask about her parents. I even went so far as to tell her that there isn't much I can say other than that I will pray for them. And she thanks me just for caring enough to try to find something to say. One day I told her that it helped me just knowing that someone, somewhere cared enough to ask.
Caregiving is a lonely job - and yes, it is a job. If you don't scream, you might even find someone that can give you helpful advice. My DH's niece is a 24/7 caregiver for her husband and after my DH passed, I brought her some of the supplies needed for caregiving and she was thrilled. I don't have to tell you, supplies get expensive over time. I can only deal with so much after losing my DH but I need to bring her more of what I accumulated over the years.
Hang in there Els1eL - you're doing a Mitzvah and you are Blessed.
people can really be at a loss of words when trying to express caring so i grit my teeth when im the caregiver and hope they understand when im the friend.
but ive finally come up with best wishes ... and hope that thats just right.
As to acquaintances, Just say - Thank you they are doing as well as can be expected under the circumstances.
All others: Just say "Thank you!"