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Thinking how to do
Myrrh
Posted: Tuesday, October 6, 2015 4:47 PM
Joined: 10/6/2015
Posts: 8


Thinking how to do... that is the most difficult. I sit in a peaceful sort of stupor, but there's a restlessness inside to 'do'. I have a list, although I have to think about it to remember what is on it. But that's not the problem. The problem is that everything has become so difficult. If I decide on a project, then I have to remember all the things I'll need in order to do it... and I'll have to remember where to find them... and what order to do them in. So much easier just to rest in this place of 'non-doing', but it makes me sad.

Thinking 'how to do' is so difficult. But looking at 'what is' and describing what I see is very satisfying. So I'm thankful for this site... thankful that I can put words on a page... instead of just sitting in a stupor.

The_Sun_Still_Rises
Posted: Wednesday, October 7, 2015 4:31 AM
Joined: 7/24/2015
Posts: 3020


Yeah, that would be the issue with executive function and short term memory (which is not so much the trouble remembering, but the difficulty with the task that you experience).

Me too. Every task is so painstakingly hard, and long, and slow...and it is like that again the next time I do it too. Most days I am pretty patient with that, maybe I have just become used to it, but sometimes it is very ugg.

For me it is the figuring...figuring how to take what I know I need to do, and translate it into literal function.

Welcome to the board, there are some really wonderful people on here.


Mimi S.
Posted: Wednesday, October 7, 2015 8:39 AM
Joined: 11/29/2011
Posts: 6374


Welcome to our word,Myrrh.

Do tell us more about yourself.

sometimes as the disease progresses we have to set our goals a bit lower.

it's a juggling act. We do want to eep pushing to do as much as we can and at the same time, we have to understand, that as 'much as we can' may be less than it used to be.

I am a very strong believer in what several of us on these boards call Best Practices. The Alz.
Assoc has recently come out with a new poster including these, but I can't seem to copy it here.

There are other things you can do to help slow down the course of this disease, including:


(1) Sticking as closely as you can to a Mediterranean diet (with wine and nuts), which has been shown to help prevent/delay the onset of AD, and also slow its progression. See:


Basically, it involves:

- High intake of vegetables, legumes, fruits, and cereals

- High intake of unsaturated fatty acids (mostly in the form of olive oil)

- Low intake of saturated fatty acids

- Moderately high intake of fish

- Low-to-moderate intake of dairy products (mostly cheese or yogurt)

- Low intake of meat and poultry

- A regular but moderate amount of ethanol, primarily in the form of wine and generally during meal.


To that, I would add eating a quarter cup of nuts every day -- quite a few studies have found they're very good for you.


Also, olive oil is very good for salad dressings etc, but not so much so for cooking especially at higher temps. Use canola oil for that, or a mix of the two. (I've seen plenty of products that contain olive and canola oils.)


Avoid hydrogenated fats and trans fats like the plague.


(2) Lots of physical exercise ... there is quite a bit of evidence it can help prevent/delay onset.


(3) Lots of exercise for the brain -- activities that involve learning something new. I've seen some reports that learning new things coupled with using a computer can be particularly helpful.


(4) Socialization, doing things with friends and family.


(5) Plenty of rest.


(6) NO SMOKING!!! and avoid air pollution as much as possible.


(7) Do whatever you can do to minimize stress.



Do keep coming here.



Iris L.
Posted: Wednesday, October 7, 2015 1:29 PM
Joined: 12/15/2011
Posts: 15411


Welcome to our online support group, Myrrh. Yes, doing is harder now. But we can still DO things. We just have to make adjustments. Change our priorities. Focus on what matters the most, and let other things slide.

We talk about this a lot. I hope you continue with us. It is easy to become discouraged.

Are you on medication? Medication helped me improve my functioning a LOT. Also, following Best Practices as Mimi has described above has also helped me.

Please keep posting, and tell us more about yourself, Myrrh.

Iris L.

FrankDavis
Posted: Thursday, October 8, 2015 5:25 PM
Joined: 10/8/2015
Posts: 1


I am a caregiver and am currently taking care of someone with Alzheimer's.

A couple of characteristics a caregiver should have for caring for a person with Alzheimer's or dementia.

- Respect
- Never get mad
- Be aware at all times, sometimes they may run
- Be willing to repeat the same answer to the same questions

Im here to try to better myself and see other peoples opinions on to what works for them.

This post has been edited by the AlzConnected Moderator.

Myrrh
Posted: Thursday, October 8, 2015 10:34 PM
Joined: 10/6/2015
Posts: 8


Can someone still take joy in me? Is it still possible to love and be loved? These are the things that work for me.
rellajet
Posted: Friday, October 9, 2015 8:36 AM
Joined: 10/15/2013
Posts: 382


Yes yes yes! I dont know anything about you but I can tell you that my 91 yo mother lives in a MC facility only 3 miles from me (I moved her here from 200 miles away when Dad died). I see her now a lot more than when she lived in another state.

I love her because she's my mother but there is still for me so much to love in her as a person who is so lonesome without her true love, and still so sad. And she is also sad because she knows that her life as she knew it is gone. She knows something is wrong with her but just not sure what. But she tries so hard to keep on the sunny side.

And she smiles with joy and gladness everytime she sees me or my siblings. She is happy to sit on the porch or take a walk or look at photos. She is sweet and funny and she tries so hard. She will sing little songs and diddies all the time... and laugh. Yesterday she was trying to say "peter peter pumpkin eater... and we finished it together. I play games with her and the other ladies there, sometimes we have "sing alongs"

Yes she is still very loveable and I have much joy with her. She is not exactly the mother I have known but thats ok, I love her dearly no matter.

Yes Yes Yes there is still joy in you and you are still lovable. I hope there is someone in your world to show you that.



hermanthegerman
Posted: Friday, October 9, 2015 8:52 AM
Joined: 6/6/2015
Posts: 36


Hello Alz+!

Nice to see you. How is that dog of yours?

Last week grandma told me she has very few thoughts anymore and that she feels as if she is on vacation? Please advice.

Cynthia


Mimi S.
Posted: Friday, October 9, 2015 6:41 PM
Joined: 11/29/2011
Posts: 6374


Herman look for a suggestion on the other thread where you posed this question.
hermanthegerman
Posted: Saturday, October 10, 2015 12:00 AM
Joined: 6/6/2015
Posts: 36


Thank you Mimi. I had not intended to double post! Yikes! I must be tired...
hermanthegerman
Posted: Saturday, October 10, 2015 12:00 AM
Joined: 6/6/2015
Posts: 36


Thank you Mimi. I had not intended to double post! Yikes! I must be tired...
Myrrh
Posted: Saturday, October 10, 2015 10:32 AM
Joined: 10/6/2015
Posts: 8


Thank you, rellajet, for your encouragement and for sharing this delightful story of time with your mother! It gives me hope that even though we may be marginalized by those who don't know us, our loved ones may still be able to see past the loss of our personal identity. At our unspoken core, we are still there.
jess1992
Posted: Sunday, October 11, 2015 9:05 PM
Joined: 10/11/2015
Posts: 32


I understand how you feel I often try to do things and find myself spacing out
Iris L.
Posted: Sunday, October 11, 2015 9:36 PM
Joined: 12/15/2011
Posts: 15411


Welcome to our online support group, Jess. You have come to the right place to learn what to do to care for yourself. Please do not hesitate to post questions and concerns. We are here for you.

My diagnosis is cognitive impairment not otherwise specified. I have been on Exelon patch and Namenda for over six years. I visit my neurologist tomorrow. I can't wait to hear what he has to tell me.

Iris L.

jess1992
Posted: Sunday, October 11, 2015 10:09 PM
Joined: 10/11/2015
Posts: 32


Thank you Iris I hope things go well at your drs I'm really hoping to connect with people here
Iris L.
Posted: Monday, October 12, 2015 12:29 AM
Joined: 12/15/2011
Posts: 15411


Jess, if you go to the main "I Have Alzheimer's" page or the "Young Onset Dementia" page, and click on the green tab that says "Add Topic", you can begin your own thread and introduce yourself. The members would like to get to know you.

Please tell us about yourself and your diagnosis, and what you are doing for yourself. Do you have any questions that we might answer? Do you have any tips for us?

Iris L.

Kap
Posted: Tuesday, October 20, 2015 1:44 PM
Joined: 10/18/2015
Posts: 4


Hello I am new here today. I am surprised and pleased by the reference to the Mediterranean diet. I have seen this before, used by American people who thought they had Mediterranean DNA, and their Doctor's didn't know and so didn't recognize and know how to treat diseases common to the Mediterranean people. I also have Ankylosing Spondylitis and one of the things they tell us is to eat healthier. My problem is I am cooking less and less, because I am getting burned at times so my diet has gone way down hill as I live alone.
There is a study now called "Genes For Good" and they have an Facebook page. All you have to do is fill out a health questioner which takes about a 1/2 hour and 2 days of tracking your health, and they send you a DNA spit kit so they can test your DNA with diseases and Ancestry. This research is Free, and they need older participants. I could think by the cognitive questions they are looking at Alz.. I filled out the questioneer, got my spit DNA kit, and mailed back my sample. I should have results with in about a month. To get this kind of test in programs like Ancestry it is about $100. This is free and gives you your raw DNA, your Ancestral DNA and Health. Go to Facebook.com/GenesForGood It is a good tool for us


Kap
Posted: Tuesday, October 20, 2015 2:54 PM
Joined: 10/18/2015
Posts: 4


Hi It is good to see a caretaker here. I had forgotten but I used to take care of some Alzheimer's patients in their homes and in a nursing home in the 1970's, in my 20's. We had some good fun. One lady who was 102 liked to watch cartoons and I took care of her once or twice. She was very quiet and docile. She stared at the TV for hours without saying a word, until a dancing Hippo in a Tutu (Probably a Disney production) and she finallybspoke and said; "That is the ugliest woman I have ever seen." Such mean spirited words from such a kind looking lady, and she didn't appreciate it when I pointed out it was a cartoon.
If you were taking care of me, the hardest parts would be to remind me to be nice to you and respect you and your choices and go by your word, and to trust you.
I sit here alone because I have mostly driven people off by saying mean things to them about them or about others they knew. I don't think I realize in the moment what serious damage I am doing to my social life. I see a pattern in my deceased Father's behavior and my own behavior which is why I think I have Alz. and not so much, a pattern like my Mom's who is still living 700 miles away in an assisted living home my siblings placed her in. My self assured mother, who used to run our Dad and our family with the wisdom and goodness of the modern mother of the 1950s has become a stubborn woman who tells me she says stupid things to people and she doesn't know why. She had a hissy fit the other day when there was no coffee in the breakfast room.. She has found a chair she wants to sit in in the Cafeteria and no amount of coaxing is going to get her to move out of that chair. The patterns are behavioral and scary to me.
She has told me consistently for the last 5 or so years that she and Daddy wanted to move down here by me in a retirement complex 3 blocks away. My siblings prevented her from moving here saying I am too ill to care for her. (No mention or thought of who cares for me and am I OK) I have told mom all she has to do is get on the train and then stay on the train for 24 hours and get off the train here. She can't do it. I don't know why, if she is just playing with me, if she is just saying what she thinks I want to hear, or why she says these things.
My Father used to pull out extension cords and lay them out all across the lawn, and then he would trip on them, breaking his hip, hitting his head, etc. I have done the same with speaker wires, and like Dad, it resulted in surgeries and lots of Physical Therapy. I would break my shoulder joints by trying to stop my falls. Like Dad, I am angry at most of my immediate family and keep repeating the stories to those who don't care or don't want to hear it (Like my Mom) of why and how. I don't speak to them. I only talk to my Mom, who could probably tell me if it is like Dad, if I can catch her on the phone on a clear day. I have not gotten my siblings mixed up with other people, but I do think the worst of them . I am withdrawn. I quit driving about a year and a half ago, because my licence expired and I didn't want to have to go to the DMV to get a new one. I don't go outside much any more except to walk my dog Lucy or go to a Doctor Appt. I am a diabetic w/ insulin dependence, I have Ankylosing Spondylitis a very painful disease that turns your collagen tissue into cement. I have to take multiple medication for these diseases, including opiods and xannax. Between all of this care I have to do for my own body, I have a dog and a cat I also do for. I need to make sure their lives are safe and happy and there are no pills on the floor, or any thing which could harm them. They are about the only companions I have.
I think I need some kind of help. I think I need help with housekeeping, medication, motivation, and anger management. I saw my dad ruin his relationship with his son by calling him a thief stealing all his belongings and crying about it. It only made my brother angry, and he vowed never to see them again. We are not close any more.
I do not know the first thing about how to get myself help. I moved into a senior retirement apartment out of town and was bullied into moving back into my old home town. I am not the only old lady who says mean things or gets offended by them.
Now I find I am also being targeted or bullied in my own town I have lived in for over 50 years and I can't help but wonder if it is because I said mean things about people like my Dad used to do before he died. He got kicked out of a lot of places because of his temper or his words. Or I wonder if it is because I am alone, no help, and predators see me as someone they can rob or hurt.. I make sure I am home by dark
Before I came down with what ever is changing my personality, I did OK . I went to school, graduated, taught K-12 as a sub, held public elected office for 2 terms and got along with most everyone. I had plenty of company and good neighbors. I was known for having a sharp tongue at times but nothing like this. I was able to choose my words and actions and I usually had a home full of company and good friendships. It is like I am saying things which I know are wrong but I can't stop and think before putting my brain and manners in motion. Next thing ya know 3 more people are mad at me for saying something weird or uncalled for about them.
My mom has forgotten how to use the computer which scares me all ready the phone don't ring for months and I get no personal mail except for maybe a Christmas card or a birthday card. Without the use of the computer, I will lose my last connections with the outside world. So I thought I would write this to the message boards. Sorry if it is on the wrong board.

Mimi S.
Posted: Tuesday, October 20, 2015 3:35 PM
Joined: 11/29/2011
Posts: 6374


Dear Kap,
Please call our help line: 1-800-272-3900. Ask if your local chapter has someone who can visit you at home. Please do this now. The help line may give you the number of your local chapter to call.

Also, what was the process of your diagnosis? I'm wondering if other types of dementia were also checked for.


Kap
Posted: Tuesday, October 20, 2015 4:05 PM
Joined: 10/18/2015
Posts: 4


Hello, Thank you for responding to me. I put the phone number in my contacts on my phone and will call them. My General Practitioner Doctor has been seeing me for about 15 years and he knows I am forgetful and that I want to get a brain scan. I am also hoping to get a genetic marker back on my DNA test for the Genes For Good research from the University of Michigan. So the place where we are on diagnosis is by cutting way back on the morphine, from over 250 MG a day to 90 Mg and the other blood tests he has done on Vitamin B 12.
. I think my Dr. thinks it could be related to either the Morphine or a Vitamin B-12 deficiency. He keeps offering me shots of Vitamin B but those tests came back normal. We have cut back the Morphine to 90 mg a day and he is OK with it staying there. We do not think it is the morphine causing the memory loss because I was having memory loss before he put me on morphine, although I have been on Opiates for over 35 years. Since my B-12 is normal I don't think it is that either. Although AS and other HLAB-27+ diseases can cause what is called "Brain Fog" this is more serious as I am breaking bones when I fall. I will make that phone call. Thank you. Kap

 
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