How should I talk to my friend's about my father's Alzheimer's with out being a downer?

4 answers | Last updated: Oct 04, 2016
4oneill asked...

I help care for my father (in my home)with late stage Alzheimer's. When friends ask how he's doing, lately I struggle with always having to answer them in the same sad way. We still find gifts in every day with my father, but there is no happy ending to Alzheimer's. The disease is a beast, and it only goes from bad to worse. I have always considered myself a positive person, which is probably why I struggle with this so much. How do I answer this question, without always feeling like debbie downer. I am guessing it's just another layer to dealing with the awfulness of Alzheimer's, but if you have anything to add I would be most grateful. This website has been everything to me. May God bless each and every one of you for dedicating your gifts to help those of us traveling down this lonely highway.

Expert Answers

Joanne Koenig Coste is a nationally recognized expert on Alzheimer's care and an outspoken advocate for patient and family care. She is the author of Learning to Speak Alzheimer's. Also, she currently is in private practice as an Alzheimer's family therapist. Ms. Koenig Coste also serves as President of Alzheimer Consulting Associates, implementing state-of-the-art Alzheimer care throughout the United States.

You are so right there is "no happy ending to Alzheimer's". Talking to others about Alzheimer's may even push some of the negative things to the surface. It seems that we, the carepartners, have only two choices when it comes to responding to friends who ask about how our loved ones 'are doing'.

The first is to say "he's just fine", "I'm doing fine", "everything is just fine" which only serves to stifle our real emotions.

Once in awhile we need the opportunity to say, "this is really what is happening to my beloved parent..." or "this is absolutely the worst time of my life...". The secret is to save these latter honest replies for our closest friends and family members or for our clergy and healthcare professionals.

Perhaps there is a middle ground that may serve to make you feel less like 'debbie-downer' and a bit more positive when friends ask about your dad. I saw a similar quote to this many years ago and used it to keep myself bouyed during the difficult carepartnering times - See if the following may work for you: "I sometimes cry because I know I'm losing him, but I smile and laugh when I remember that I once had him in my life". The actual direct quote is "I don't cry because it's over, I smile because it happened". I hope this is something that feels more positive for you without the overtones of either woe-is-me or Pollyanna.

Please remember to take care of yourself.

Community Answers

Manito7o7 answered...

I think you bring up a good point. I have this problem too. I am 21 years old and my mom has been diagnosed with dementia for about six years. When my friends or friends parents ask me how my parents are doing, and I know that my mom is getting worse while my dad is becoming more irritable, it's hard to come up with an answer especially since it's not optimistic. Usually I just tell them the truth that my mom is getting worse and my dad is very stressed, but I don't exaggerate or go into detail. I agree in adding positive aspects. For example, I might say "the other day I took my mom for a walk and it was good" or "she was dancing to some music. my mom is so cute"

A fellow caregiver answered...

Thanks to this website, I don't feel so alone. I think we have all felt at some time that no one else on the planet is going through what we're going through until we see a site like this. Sometimes we realize that others have it much worse.

My dad has dementia and lives in Michigan. Us kids live in California, Arizona and Alabama so none of us are there to be with him. Thankfully, last year we got him into a beautiful facility and now at least we know he is safe. Dementia is a mean disease as we have discovered. He has become aggressive and has managed to "escape" from his ankle alarm at least twice.

4oneill, you have a big hug from me because now I can say "I know" and I hope you have friends and family that will ask how you are doing as well as how your dad is doing. Somehow, just to have someone ask, "would you like to go out for a cup of coffee" can have amazing affects.

Kscribe answered...

First, my thoughts and prayers are with you 4oneill. Please remember, you are not alone and there are many other families experiencing the long and difficult road of Alzheimers who are also learning how to live with this disease as it unfolds. My mother has had Alzheimer's for 10 years and I've learned over the years that the best response, for me, is to only share about my mother's current status when I'm asked, to be honest in a matter-of-fact way about her condition (and maybe even share a funny story that's happened to us--and there are humorous stories!!), and always, always end by sincerely thanking the individual for asking. This way, they know that I appreciate and acknowledge the great kindness that they've extended to me by taking the time and actually caring enough to ask about my mother. Also, I feel as if I've let them know that I've answered as clearly as I could without going on too long and have tried not to take advantage of their kindness and attention. Hopefully, they'll feel comfortable to ask me (or another Alzheimer's caregiver!) again in the future and it may be just what I need, on a particularly difficult day, to feel supported and less lonely in my caregiving duties and in my ongoing grief at losing a beloved mother throughout this excruciatingly slow process.

Remember: you are not walking down this "lonely highway" by yourself. There are many of us with you in prayer and spirit. Have courage. Be kind to yourself. We are supporting you. . .