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I Have Alzheimer’s or Another Dementia
The most important thing
The most important thing for me as a Dementia Pioneer is to develop a philosophy to enable me to be motivated to go forward. I fell into a deep depression after my geriatrician told me I had to accept that I had dementia! After a long while and much introspection, I came to the conclusion that if I had dementia, I was not going out like a victim! What does that mean? I would do whatever it took to maintain my independence and to maintain my dignity. I would make my own decisions about my own life and not be beholden to others who are uneducated and uncaring about dementia and my specific needs.
This philosophy keeps me focused and is helping me let go of whatever needs to be gone--so many things. And helping me to feel good about what remains in my life. I have to keep reminding myself, because I forget. But when I do remember, I feel good; I feel oriented and I feel stabilized. I feel like I can keep going.
Beautifully said. You are an inspiration and a mentor.
Dear Best Grandma: The diagnosis kicks hard and sends us all for a loop. Depression and anxiety seem to come with such a diagnosis. At 57 I was devastated with the news. I knew though that there were signs once I had an MRI and was told about the 100s of silent strokes my brain had had. Here is what I did......to over come the over whelm.
Sought out a psychologist, someone to talk to. Talked to my doc who changed prescribed Lexapro (for depression) and Buspirone (for anxiety) . My word searching calmed down, my anxiety got back in the box and I was then able to research my options. It took about 12 months after getting the word to get everything in order. I cried myself to sleep so often. I didn't and still don't want this ................but its the cards we've been dealt and we still have lots of living to do. So step toward the fear and grieve ... you have denial, anger, depression and hopefully acceptance to go through. Getting to the acceptance part has been the hardest part of this. One foot infront of the other...........you've got this.
Iris, i love your new philosophy about living your life! Your writing inspired me to start writing down my own feelings. Like you, i fell into a deep depression after my diagnosis, but fortunately my doctor told me that dementia in itself, causes depression and suggested i get counselling. I also went on antidepressant that finally kicked in a couple weeks later.
I asked for a counselor that had lots of experience with people with dementia, and i got a GREAT one! He has been encouraging me and has many words of wisdom. I take LOTS of notes at each session as i forget what he has said 5 min.later. Its great to go bak thru my notes as it helps me move forward! Perhaps his greatest advice has been that i am actually going thru the stages of GRIEF. I went into denial rite after my diagnosis as i couldnt handle it. It was my way of coping until i could, little by little, face the truth.
Then i went into the deep depression. My counselor listened to ALL my thoughts and feelings and said they wer ALL NORMAL and a natural part of the grieving process. He not only reinforced my feelings but said it was good to LET HEM OUT. I iniatially kept them to myself without telling anyone as i thought it was a sign of weakness if i admitted to my family and friends that i was struggling with the "feelings" of dementia, let alone the actual manifestations of the disease. This was such a wrong thing to think!
I highly recommend that EVERYONE with dementia get some counselling to help process your feelings, and to hav a professional tell you that all these negative thoughts and feelings were ACTUALLY normal. Ive found through the counselling that its easier to talk to my counselor than my family and friends. It lets me get out the emotion of my thoughts bfor i actually try to talk to those close to me! Again, another good reason to at least to try a session of counselling! My Medicare pays for MOST of the session, and then my supplemental pays the rest, so it COSTS ME NOTHING to get the counselling! Perhaps in the future, Medicare will pay for all of counselling for people with dementia, and hopefully the doctors will see that counselling is SO HELPFUL to anyone with dementia, and automatically recommend to all their newly diagnosed patients!
If you are a caregiver, please suggest to your loved one that they get counselling! They may be holding in some of their feelings to you and others.
The other stages of grief that i hav gone through is anger and fear. Both of those feelings hav been just as strong as the initial denial and sadness. My mind does go back to the other stages here and there but the counselling has helped me to recognize those thoughts and process them more quickly.
If any of you have any further questions about my process, please go ahead and ask as im a fairly open person. I had desperately looked for a dementia support group in my city soon after my diagnosis, but we didnt have one. I was so.glad when i found out about this website and read through most of the postings of people with dememtia, as it further helped me to process my thoughts, but also helped me to NOT feel SO ALONE! Even though my family and friends have been SO SUPPORTIVE, i was still feeling alone!
Counselling also helped me to see some of the things i was expriencing were actually part of the dementia! So your sharing has HELPED ME face my own feelings and fears! PLEASE keep sharing as i hav so much to learn about this disease! By the way, i hav moderate vascular dementia with one marker for Alzheimers, so that has not actually been diagnosed yet.
My neurologist also recommended that i get NEURO-PSYCHOLOGICAL testing as a baseline for my dementia. Again, my medicare and supplememtal paid for it all. They will do the test every year to compare to the first test. Many people with dementia want to know how fast the disease progresses, and it is very difficult for the medical experts to say, as each person is so different! Plus, our symptoms wax and wane each day, week, and month. So this test is a major way for the doctors to monitor our dementia progress.
Lastly, i think this forum is actually easier for me to let my feelings out than a support group where u are sitting face-to-face when you let out these deep, raw feelings. Mayb as i progress through these postings, i will become strong enuff to face people when expressing my thoughts. So for now, i will continue my counselling and reading your postings. So KEEP WRITING and POSTING as i need to hear your thoughts and feelings to legitimize my own. Wishing you all the best in your journeys! Reach out to others, keep reading these posts, and DONT keep thoughts inside to fester!
Love to you all, Vickie
Best Grandma, when I fell into a deep depression years ago, I gained a lot of support from reading posts of the members here. In those days there were more postings. I also read readings of people who had been diagnosed with a terminal illness, such as late stage cancer or ALS.
I finally came to the conclusion that, if I did have dementia, I was not going out like a victim. I would do whatever it took to fight for my life! What did that mean? That meant that I would make my life the way I wanted it to be, not what other people said it was going to be.
By fighting for my life, this did not mean that I was expecting a cure. I was expecting a better life. I gave up listening to outsiders. I realized I had to draw on my peers, who were other people in my situation.
I had to fight hard to put up boundaries around myself to defend myself from negative forces, which were all around me. I had to work on being conscious about bringing in positive forces into my life. I gained insight from a few people that I could look to as role models who had also fought deep depression. I relied on prayer. I had to cut negative people and negative situations out of my life. It has not been easy. Every day I work on defeating depression. It does get easier.
Best Grandma, I encourage you to do whatever it will take for you to work on your depression. Depression can be dealt with. I wish the best for you!
HANG in THERE Best Grandma! It is very difficult when first processing our diagnosis. I posted a lengthy writing a few minutes ago. I have a friend who is a trained and registered laughter therapist. She kept encouraging me to at least start smiling. She said if i PRACTICED smiling, it would eventually become more automatic. It was very hard to start practicing, but then i REMEMBERD (LoL), that i used to smile ALOT bfor my diagnosis. I am happy to report that my smile is gradually appearimg automatically as im startimg to make jokes about my dementia. It started by calling my forgetfulness when talking, "a dementia moment." Whenever i said the wrong word, couldnt come up with the next word, or completely forgot what i was even goimg to say, i would say outloud, " Dementia Moment." I found that the more i called these misspoken words for what they were, i actually slowly started laffing when i made mistakes. Now i even say it for all my dementia boo-boos (another way to hav a little lightness through all this despair).
Now ive even starting "joking" about my dementia when out in public. If i forget somethimg in front of someone, i tell them i have dementia. I think it helps me to not feel stupid after a forgotten or mistaken thing. In this way, i am telling the person that "Im NOT STUPID, but have an actual excuse bcuz of dementia.
Im not saying this has been easy to get to the point of joking about my dementia, as it hasnt been AT ALL. Its taken weeks or months to get to this point (*Does anyone else have trouble keeping track of time?). BUT starting with the practice of smilimg helped me get the process going. I finally feel like the DEEP, DARK CLOUD hanging heavily over my head and heart has finally lifted. I suspectbthat it will rear its ugly head again, but thats when im going to keep on reading ALL your posts, and keep writimg down my own thoughts and fears, and hopefully some laffs along the way. I REALLY LIKED the gal who chose the nickname of something like "Keep on Smilimg.
Wow Vickie. I'm glad you are having a good experience with your psychologist. Your post brought up very bad memories for me. I had the opposite experience. While I was in my deep depression, I was consulting a psychologist who worked only with older adults from a senior mental health clinic. She told me I could not have dementia because people with dementia are not aware of having it. Obviously, from the members of this board, this is not true. She refused to discuss it.
Since having memory loss and dementia was the reason for my deep depression, I was stymied from getting any help from her. In fact, she deepened my depression because she made me doubt myself. I only began to come out of the deep depression when I took my own life into my own hands and discharged her.
It was a scary time, but I realized from her and from reading other stories, that professionals are mostly clueless about what it means to have early dementia. In fact, this terrible experience was instrumental in my coming up with the concept of Dementia Pioneer. I realized that whatever I did for myself, I would be a Pioneer. We are the first PWDs who are proactive in our own care.
I will stop here because I have little good to say about psychologists and I am feeling angry. Depression is anger turned inward, and I won't allow myself to fall into depression over these disturbing and distressful memories.
Hello Online Friends:
Some great sharing going on out here. First, has anyone heard from Alz+
online? Have been very concerned.
I, like Vik have had a great experience with my
psychologist. There isn’t a support group
locally for those with dementia, only for those that care giver. My psychologist and I have tried to get one
start here locally. I adore her for
helping me. The XXXXXX XXX. initially
sounded like they would partner with us, but that hasn’t worked out. That’s an entirely different post.
None the less, being new diagnosed is devastating to say the least. My testimony is that we can with all the
right people helping, such as counselors and docs we can find a sense of
peace. I’m living better through
chemistry. The anxiety meds are
wonderful because truly I was a MESS. I’ve
learned about meditation which I now listen to a guided mediation to get to
sleep at night. Insight Timer is a free
app with thousands of mediations to pic from.
My favorite is called “Sweet Dreams Meditation” on the app. My brain needs the distraction, otherwise I
was dwelling on the disease and the future.
Try it, its free.
have a question, on your bad days, do you sometimes feel off balance, air
headish sort of? It’s hard to
explain. I had a day like that
today. Just goofy.
outlet I’ve joined is Dementia Alliance International. I have been assigned to a support group with
others with dementia. We meet online
SKYPE once a week. I just joined and was
thrilled to meet everyone from across the country. Check it out.
Hey Vik, yes I use notes on my phone and I use an app on my phone called Any.do. It is a great little reminder app. If someone calls it asks if you want a reminder to call them back. At the end of each day it asks you about tasks you didn't get done and if you'd like to move them to another day. I know EXACTLY what your saying about losing the thought b4 getting it written down. Dang! I do it all the time too.
The massage gig sounds deliteful. Anything that gets the body back to feeling as one entity. I had my first one about a month ago and was wonderful. The massage felt so good.
I know there is a bunch of chatter about CBD oil. I haven't went down that road yet. I have started the KETO way of eating as it is supposed to be a brain enhancing diet. I'm only a week in thus far.
I have vasular dementia from white matter disease, so my number one priority is to keep my BP low . So far so good, its a must. BP causes me silent strokes and silent strokes progress my disease. Brain scans show in the moderate stage, although I feel I do good cognitively. Keep pressing forward.
I have read about CBD, you won't get googly, as it do not have THC which is what gets you high if you are a marijana user. I'm hearing mixed about it, but some swear it is helping them especially Alz folks. Not heard anything for Vasular folks. If you do get it, get it from a state that has legal marijana. Like Washington or Colorado. I have not tried ginko and have it on my list along with Bcomplex. I need to get started on those. I may snoop out the CBD soon as well. I need to do a little more research.
Enjoy the upcoming weekend.
Best Grandma, i am so sorry you hav fibromyalgia! I hav a friend that has it and suffers so much. Its bad enuff having dementia, but then u hav fibro on top of that. Oh my--how difficult your life must b. Hang in there with EVERYTHING, and keep on posting!
Thanks Vik. Before I tried the hemp oil capsules I was having to take pain meds many days in the week. Now that I take one of those daily my pain is manageable. On really bad days I take a second one. Because I have bipolar disorder I have confirmed these capsules won't have an adverse effect on my medication.
Smiles, hav u read the posts in "Clinical Trials?" I just looked at that subject and am SO EXCITED! I use to b a therapeutic massage therapist for 14 yrs. and was voted the best therapeutic massage in our county for many years. In order to obtain my state license, i had to take extensive program. Tben. in order to renew that license, i had to take many CEUs each year.
Since i love learning, i took many health-based classes! Three that i took were on Essential Oils. Ive always had super smell "talents" so i luvved those classes and i incorporated essential oils into my clinic. So what a PLEASANT SURPRISE to find an article on Essential Oils for DEMENTIA! I cant wait to try those oils recommended for our disease! Heres most important part of that post: crap, i can't do a copy and paste in this program. Lemon and Rosemary are recommended for daytine (they stimulate) and lavendar and orange in the evenimg (relax and calm).
So u can read more about it in subject posts i talked about earlier if ur interested. Made my day tho and cant wait to try! I know its not a cure, but can mayb help in our daily struggles.
SSmiles, a friend told me of a couple things on dementia and wondered if u knew anything about these:
Mark Hyman, neurlogist--his website and Podcast called tje Broken Brain are suppose to b really Good! Also hav u heard of Acuenergetics? I dont know anything about either but figure if a friend sent them to me its worth teading....
Hey Vik I have tried to find the Broken Brain on line, but no successful thus far. I did watch Teepa Snow called the changing brian on You Tube. I'm going to copy the link and send to my family. It helped me understand some of the changes we've experienced or will in the future.
I like you was great typist. THOSE days are GONE! Holy heck, Im over corrections. Sheesh!
Does anybody have the following type of day: Get up, feel as if it's going to be a normal day. You go along and then mid day the tears come, the emotions are running free like a game of ring around the rosie going on around you? Today was one of those days. No reason, just emotional.
Another thing I need to STOP doing is reading posts on MOST of the FB groups about dementia. The are 95% caregiver posts voicing their frustrations and depression about their situation. God how I wish I could be a caregiver again and not have this diagnoses that is slowly progressing.
Enough, chalked up to just a wierd day.
So sorry you have an added diagnosis of Fibromyalgia to manage and deal with. Dang girl!
I have a friend that has had great success with CBD for inflamation of joints. She like you reports that within 20 minutes she feels better. I need to try it again, I just couldn't get past the tincture taste. But I've heard that honey helps that. I think it will be a great drug for some things.......just not sure about vasular dementia.
I'm going to give the aromathery gig a shot and see if that helps, like Vik mentioned. I've read tons of posts about the good it does for mood.
Hope your doing well.
Smiles, sorry you had an emotional day. I have those alot but am excited to try upliftimg essential oils as ONE way to help with dememtia. My counselling has helped with tbe sadness as he said that i should not dwell in tje past OR future but, of course, thats very difficult for me.
Im workimg on my FEARS rite now. And i agree with you about reading the depressimg posts in facebook bcuz most of them are caregivers venting their frustrations. Ive been reading ALL the posts on this site except for caregivers hoping to get lots of info on our disease. One can even read OLD posts! I figure its best to read posts from people that are experiencing dementia to help me deal with my curremt and future symptoms.
I actually hav been reading about Lewy Body dementia and think i hav that type bcuz i hav MANY of tbe same symptoms. So im going to ask my neurologist and coumsellor about it as the neuropsychology tests are suppose to also help with that diagnosis.
Even if i.hav that kind of diagnosis, the treatment is the same as other dementias except for the addition of another med. I think ur like me in wantimg to get AS MUCH info about dementia that i can. My obsession with that is, i think, bcuz im afraid of whats to come in the future for us. So thats why im workimg with my counsellor NOW about my fears. He not only encourages me with soothing words, but also helps me to get out of the particular grief level im currently in. Like i said bfor, i fall back to previous stages, but sinc ive already talked about those with him, its easier for me to work thru the feelings on my own.
Ive also found that writing out my feelings helps me to "release" that intensity of raw feelings. Plus, i think it helps me not to feel so alone when i read about others feeli gs, so im going to keep postimg my feelings so that new people that join this site will hopefully find at least some understanding and comfort in reading my posts. So, keep on postimg Smiles!
P.S. --- if you can find any type of humor (i googled "humor dementia" and fou d cartoons about dementia tbat helps me SOMETIMES to at least smile. For xample, when i type, sometime s a space appears in a word, and i smle bcuz it could b interpreted as an analogy to the "spaces" in my thnking. Get it?
Vik, if you are experiencing fears, you might be interested in learning Alz+'s perspective. She encourages looking at what you are fearful of, and examining it with interest. Get to know it. That way it doesn't have as much power. Tomorrow I will search for one of her threads that exemplifies her perspective.
Also, there is a thread on this board called " To lift our spirits." You might want to have a look.
BestGrandma, that is wonderful news that you are having some brighter days pertaining to your diagnosis. Yes, the fear of the unknow. I with ya sis, the unknown is often on my mind. For me being able to get outside and enjoy a little sunshine will be HUGE. I'm over winter and the whole winter routine.
Sad to hear about your Fibro acting up. Great chatting as always.