What Comment Frustrates You Most Regarding Alzheimer’s?
What Comment Frustrates You Most
Regarding Alzheimer’s?
I would love to hear from you as to what trips your trigger and gets your blood boiling when you hear someone say ____________________ in regards to Alzheimer’s disease or memory loss.
Keep in mind, you might be a person with memory loss, a family caregiver, professional caregiver or even a general service provider. This might be something a person with memory loss says to you, what a family caregiver or professional caregiver might say, or what a service provider such as a Doctor might comment on. Or is it someone who knows nothing about Dementia but has an opinion that bothers you.
In turn are there things that you say, that you know frustrate: a person with memory loss, a family or professional caregiver or service provide.
Last, do you have any suggestions to change this interaction so it could be a more positive one?
I’m looking forward to your comments and thoughts!
i that stands to reason it What Comment Frustrates You Most Regarding Alzheimer’s? « Alzheimer's Speaks Blog now im your rss reader
Thanks for writing Kate
The comment which frustrates me most regarding Alzheimer’s is ‘Training’.
In the UK we have an artifical division between ‘mental health’ and ‘non-mental health’disciplines. This means there is no impetus for training our Doctors, Nurses, Consultants and other ‘non-mental health’ medical professionals in Alzheimer’s or other Dementia diseases, despite the fact that increasing number of these patients take up non-mental health wards, as our population ages.
As a daughter/carer for my Mum in year 12 of Alzheimer’s I find this situation frustrating and down-right wrong.
If I had a magic wand I would wish that all medical staff had thorough training in Dementia and the whole Nation could start a proper debate about how we deal with our ageing population and dealing with the Dementia issue to give best outcomes for patients, their families and society as a whole. The issue is not one which will go away.
Many thanks for listening, all best Heather
HI Heather,
I see the same problem here in the US. Although some training is happening here, in my opinion it is just a blimp on the screen and so much more needs to be done. It is scares me to think as the numbers increase how the world at large will catch up on education and training regarding Alzheimer’s disease and other dementias. For myself, I believe the need is so strong I actually changed careers and now speak, train, educate and consult to those willing to listen, and wanting to take action. I am but one person, but if more people feel the need and take action we can make progress. I’m saying everyone should change careers, but like yourself shifting to a mode to speak out about the needs and advocating is just as powerful if not more so. It’s all about driving change! Kudos for speaking out and thanks for writing.
Lori
The thing that most frustrates me is when people say,”There is nothing wrong with “loved one”, I just talked to him/her and he/she sounds great. ”
They are not living with the “loved one” 24/7, they only talk to them once a week, once a month and have the nerve to say that to the caregiver.
We have discussed this at support groups and have come to the conclusion that the “loved one” must save up all the good time for just those five (5) minutes on the phone.
Would those people like to switch places with the caregivers, just for one day, to see what is really happening to the “loved one”? I don’t think so.
So, when anyone says, “He/she sounds great, nothing wrong with them, I get very angry and want to shout out to them….”Can’t you see what is happening to him/her? Can’t you see what is going on right in front of you?” But, I then think, it would do no good.
They are set in their way, staying out of the life of the “loved one” not wanting to be involved. I often think they think it is catching…. so why get all upset with them.
I love the person I am caring fo., I love those moments when he is still the person I married 31 years ago. We have each other, that is all that matters.
KUDOS Jackie! What wonderful work you are doing. It is so nice to do something that has true meaning in life. Thank you for sharing your story and please say “Congrats” to the couple getting married tomorrow from me. What a great story that is.
Lori
HI Jackie
It is amazing how ell they can do at times… I’ve been dealing with my Mother’s memory loss for the past 30 years and now even in her very end stages where she communicates very little every now and then she is able to muster up a short response or look or action… Now days it makes me smile, knowing she is still there, but I used to get frustrated when others could see the disease. But as they say you see and hear what you want to see and hear.
Thansk for writing!
lori
Yes, I agree that training and education is very important. I am retired and now feel that I have started on the road of a new career. I volunteer at Health First Leeza’s Place, in Melbourne Florida.
Also, I run two (2) support groups. One is for newly diagnosed; to be sure they get into the right support group. The other is for people who have placed their “loved one” or lost their “loved one”. We have a meeting once a month and once a month we go to lunch.
We are re-socializing with people who have walked in the same shoes. We do not talk about the journey, we talk about having fun and enjoying life again.
While our “loved ones” are progressing through this disease, it seems that we lose family, friends and outside contact. So this group is to get people back into the social part of life.
We have gone on a few day trips also, which is something we could not do with our “loved ones”.
The turnout so far has been great. No less than twenty at each luncheon and no less than eight to ten for the day trips.
Everyone seems to be happy socializing. We even have a gentleman who lost his wife; and lady, who lost her husband, who met at a group meeting and are getting married tomorrow. He told me that he had lost all reason for going on with life until he met her. “She is the reason for my getting up in the morning”.
When I meet people at functions, I hear “Oh, I have heard about you, so glad to meet you finally” My reputation preceeds me. What a wonderful feeling that is. I feel that I am making a difference.
We need more educaton, more empowerment, and more people who will care enough to put themselves out there to help spread the word.
I have trouble when people say they are “parenting their parents” and have recently written an essay on that topic that was published in the Minneapolis StarTribune on Christmas Day, a lovely belated gift to my Dad who had AD. I hope you like it.
http://www.startribune.com/opinion/commentary/112403879.html?elr=KArksUUUoDEy3LGDiO7aiU
HI Sharon,
Thanks for writing. I will check out your article and I hope others do as well!
Lori
OMG I just read you article and it is fantastic. I am going to make it a post as soone as I wipe the tears from my eyes. Wonderful job.
Thank you for sharing
Lori
It wasn’t so much frustrating, it was more of a “duh” moment and I almost laughed. People who haven’t experienced Alzheimer’s do recognize changes. Several years back my husband, Ken, and I paid our friend (I’ll call her May) a visit, which we did a few times a month. It was good for Ken to get out and be social, and May was fun to visit.
She noticed Ken’s repeating things and memory loss, and whispered to me, “Is Ken getting Alzheimer’s?” I nodded that he was. Respectfully, May gave me her sympathy, and I replied a “Thank you.”
Then she went on to tell me that the good thing about AD was that other areas of the brain could be trained to do and remember those memories lost in the disease. “Really,” I replied, as she droned on about her information. Following a few more “Reallys” and “Is that right” comments from me we left. I guess, after all, it is a little frustrating to have someone, well meaning though they are, tell you about solutions for this disease. May is one of those people who knows nothing, but pretends to know the latest. Anyway, it was good for a laugh, and we need to laugh a lot so you don’t cry so much.
Oh you are so right. So many people want there to be a cure and to help. Sadly I believe many times it is because it makes it easier on them to believe things will be ok, then to begin to imagine the reality of this disease. Kudos to you for just letting her do her thing. It sounds like you have figured out a person like that is very similar to someone with Alzheimer’s in that you are not going to change their mind when they are stuck on something.
Thanks for sharing
Lori