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?
It is my belief that People do not set out to say the wrong thing, they just burp it out thoughtlessly.
When my Mother who I cared for in the last years at home died three and a half years ago from alzheimer's and I felt heart broken. I am not Married and I was always very fond of my Mother. We worked very well together. At Mams Funeral a symphatizer Who I regarded as a Friend, said with a smile on his face as He shook my hand, WELL SHER YOUL BE ABLE TO BRING THE WOMAN IN NOW ? I nodded my head and said thank You. A wise Man once
said that it is far better to remain silent and be thought a fool, than it is to speak and remove all doubt.
Folks are well-meaning, even if they seem to be avoiding the obvious or giving "trite" responses. If you need help, ask. If you don't need help, let folks know you're managing even if the work is hard and your parents are not doing their "best".
You are stressed and many mean well BUT personally I do not care! BUT if you do not tell them how you REALLY feel then they will say the same kind of things.
Something like My parents are NOT doing well they are suffering as I am. We pray alot and ask you to pray for us and we take things NOT a day or hour at a time but minute to minute. I am glad you care but this is a very hard time. None of this is going well.
I also have a friend in the late stages of Alzheimer's and her husband is physically handicapped. They recently left their home and moved to a residence with a section for her and a small apartment for him. When I ask him how they are doing he usually answers that she is comfortable and seems to like her carers and he is well and is happy that she still seems to know his voice.
I think the easiest thing for you is to just find some response such as "fairly comfortable today, thank you." or "not too badly, thank you" which is quick and polite.
Do your parents live with you or elsewhere? My husband is still at home with me and my close friends have seen how it is draining me. When other people ask me how I am doing, that is when I have trouble answering. I can't be honest because that would be to pour out all my frustration and misery that we won't be together much longer. His former colleagues see me on the street and ask about him and all I can do is thank them for asking and say I will let him know they have enquired.
No one who hasn't gone through it can understand and even those who have will not know what your family's particular difficulties are. If you can find something very simple to say it may reduce your stress, particularly if you can remind yourself they are really just trying to be kind.
I wish you well and I hope your parents eventually slip away comfortably in their sleep. I'm sorry for what you must be going through.
I know you're frustrated and anxious, but try not to take it out on people who at least took the time to make some contact. It'll be hurtful to them, and won't make you feel better for having done that. They'll also stop being in contact, further isolating you.
Consider keeping a journal and venting there.
ktsmom
"People always say" is a generalization. People who are your real friends do want to know. Acquaintances will inquire to be polite.
The second issue? It seems like you need to vent and that's ok. You can talk to a therapist or you can scream or you can throw things (in a safe place).
When someone makes this comment to me I say "we have good days, and we have bad days, thank you for asking. Today is one of the "good" days (unless it isn't.) Then I smile.
And that is true. They all are not good days nor are they all bad. I've learned to enjoy and cherish those good days because they get less frequent and farther between.
Blessings to you and your family. I wish you all the best for 2020.
After a while I think what we are doing for our loved one becomes a way of life. And as time goes on and our loved one declines it is harder to feel a sense of accomplishment, fulfillment or reward in helping our loved one because they are succumbing to the disease process. And a lot of the people that we know are unaware that as we look out at the world around us our vision is darkened by the sadness we feel. I think they are ignorant, not purposely thoughtless.
For each of the last three years I have participated in an Alzheimer’s Association fundraising event. Many people that I know who have clicked the link to my fundraising page have more than a passing awareness of what I have been going through with my mother. And in this current year I am gratified to know that more than $3000 was raised through my fundraising efforts toward research, legislation and education. My mother is now in the end stage of Alzheimer’s disease and on hospice. Fundraising for the Alzheimer’s Association is one of the ways that I take action to lessen my sense of powerlessness in the face of this horrendous disease.
None of this is easy. I still think we need to try to look for things we can feel grateful about, ways that we can find solace in an inconsolable journey ~
Hugs 🤗
CaregiverL
People are just giving their best wishes.
My mother contributed to the destruction of our relationship. I can’t change her behavior. God knows I tried my best to have a healthy relationship with her. I had to end the relationship for my own sanity. It would be great if everyone had good relationships. That isn’t real life. It’s sad for those of us who don’t have good relationships. It’s wonderful for those who do. Cherish it.
There comes a time that you simply don’t want to discuss it. It’s too depressing. I think it’s fine not to want to talk about it, especially with people who say dumb, insensitive remarks.
To stop it, let people know that you do not want to discuss it any longer because they will hear the same answer or worsening conditions. Why keep repeating the same response? It’s agonizing.
I think even if people are well meaning they shouldn’t pry or be nosy. Why? So they can gossip to others about how bad something is. It doesn’t make sense. If people want prayers they will ask for them.
People should wait to see if someone wants to discuss a personal matter instead of putting them on the spot. This is why I have told others to stop asking. If I want to speak I will. I choose very wisely who I speak to. I don’t have conversations with insensitive people or those who don’t have a clue and therefore say idiotic things.
When someone asks you such a ridiculous question, you should state the truth. Or you could say - "As you may recall (key word MAY), mother and dad have been diagnosed with some serious illnesses."
So bottom line is - You don't have to verbalize "I'm going through H - E - double hockey sticks." The person should recall that your parents are quite ill.
My mothers siblings do the same thing, but I know they really don't want to know what is going on with her or they would visit their sister. So I just respond that she is holding her own and leave it at that.
The sad reality is that most of us are alone in this. I have days where I am more angry about it than not, so I get where you're coming from.
I think, people ask because they have to ask. I understand your frustration, they have no clue what we are going thru, just respond politely. Defenitley not easy.