My son and daughter are coming next week to visit. They have not been free to travel together in years, the last trip like that was to come be with me at their grandfather's bedside while he died of Alzheimer's.

Cleaning up for this visit began a few weeks ago - when I have a day where I feel like I can do laundry, I do laundry. Usually making beds with clean sheets is an ability on same day as laundry so I put clean sheets on beds upstairs weeks ago.

The woman who was cleaning for me had foot surgery and can not walk for 2 months so it was up to me to clean bathroom upstairs and clear space. Not able to really do this, in part because garage storage can get mildewed and is blocked by deep snow.

I sold my car which was not running and had been parked in driveway for a year, to a neighbor who had it towed away for repairs. 

About once a week I am able to do a little something. I am pretty content and living alone is a challenge, and a luxury for now. Freedom to sing badly and loud, to be up and about when I am awake in middle of night and sleep when I want.

The dog and I are bonding differently and I understand now that it is likely she will go to new home sooner or later when I can not manage her needs. For now she is great comfort and we communicate easily. We accept each other, we protect eachother.

*****

I am reluctant to share more about being able to have a life by use of cbd oil and cannabis here because I sense - some ???  Either dead silence, no responses from others using it, or like I am salesperson, a druggie, or lying. Not sure why, maybe lack of other people reporting their success at finding help with it. I joined a couple online groups of people helping themselves or family members and am still learning.

I just learned about the shift in ratios of cbd:thc as condition progresses and have embraced using it to help with crying episodes, insomnia, pain, and it helps me make a one mile walk on icy road up and down hills with my dog almost every day again and in a good frame of mind.

Also was getting a sense that people think I am pretending, (hospice nurse had hard time with my Good Days vs bad days) and so have stopped interacting with anyone who responds like that to me - whether real or imagined it is better I avoid saying or doing something that makes things worse. Some days my speech is good, somedays I probably don't speak at all except to dog.

A neighbor woman friend has stepped up, we go to a grocery store Monday mornings, it is empty and she does her shopping while I wander as long as I want on my own. I bring a list, when it is time to check out she appears !!! and helps me unload cart and use credit card, she packs my stuff into her car and hauls it into my house. I put stuff away. A big success was I did move a small chest freezer a month ago and cleaned it. I can store bread, frozen veggies and fruit and if I ever cook I make extra and put it in freezer. 

Keeper is working more and looks more relaxed.  When he comes over he walks the dog so I can sleep and fixes some things or refills bird seed can on deck. He usually gives me a foot and leg massage too, I really miss those daily massages from him and how we would talk for hours, day after day, year after year. First divorce hearing is in 3 weeks.

*****

my life changed for the better since I discovered SpellCheck on this computer had to be turned ON.  writing to friends in emails again    

love you all

Dear Alz+  Thanks for the update. Don't worry about getting ready for the kids. They'll do whatever needs doing when they get here. Years ago i made that mistake. I was very ill and mil was coming to help out. I couldn't let her see the house such a mess, so I stupidly got out of bed and struggled to get the house in shape. Of curse I didn't realize it at the time. 

You have a truly wonderful neighbor.

And glad you and Keeper are doing well together.

I think there’s no response regarding CBD oil because nobody posting currently has experience with it, that’s all.

Good luck on the move.

Alz+, I'm glad that things are coming together for you.  Like Mimi says, let your kids get the house ready.  Do what you can but don't stress yourself.  

Re: cbd oil, you have posted extensively.  Readers can go back and read your notes.  There are only a few of us posting nowadays anyway.

Re: people thinking you are pretending.  I have the same experience.  They just don't know about people like us.  I have neither the energy nor the interest in trying to persuade outsiders to understand me better.

Like Michael says, it is getting harder for me to participate.  But I will keep trying.

Stay calm and stay strong!

Iris L.

I always enjoy reading what your write, alz+  both on a personal level and on a medical level.  Sometimes,  I am quietly happy for you; sometimes I feel a bit of trepidation for you until a new path is found.

This place seems to ebb and flow.  Sometimes people are hopping with new ideas and experiences; sometimes less so.  I can understand that there are points in time where individually and collectively everything slows down.  I wish sometimes that I could see the long-term picture of multiple people's "experiments" with multiple treatments over multiple years.  I want to know what is the best possible and even though I realize that is unrealistic, thanks to you and to a few others I know that CBD oil is one off the best ways to help people with Alzheimer's.

Alz+, I am convinced that we can only learn what to do for ourselves from the members here, both patients and care partners.  I have learned so much from YOU!  We just have to keep holding onto each other.

Iris

This is my first post and have finally found a place to come and read and share.  I was diagnosed 1.5 years ago with WMD (white matter disease) hense vascular dementia and swear it's taken that entire amount of time to accept my diagnosis.  I so want to learn about CBD and it's possible help.   I have done tons of research, even spoke to a plant scientist friend who thinks I should try it.  It may help some and not others, but he certainly didn't think it would hurt.  He studies industrial hemp which basically has trace THC (barely any), which is what I'm interested in. 

I had my first terrifying experience driving home last night.  For just a brief period of time (10 seconds possibly) I didn't have a clue where I was.  I didn't recognize the houses or the street I was on.  I felt panic set in....then as soon as the confusion came on it left like a whisp of wind and I realized where I was again.  When I told a few loved ones they said "oh yeah, I do that sometimes too."  It wasn't the space out driving thing, it was I do not recognize where I am.  I was one block from my house.

You post mentions those that think we are pretending.  What is with those that think we are faking or whatever it is they think. I have a few that that ---- it seems----that they think I am faking. I'm guessing they don't understand that I can communicate easy some days and not so much other's.  Points to ponder....... hummmm.   

Thanks to all that post, I've come and read many posts and finally found the courage to post myself.  I desparately need an outlet.  It's so hard pretending I'm normal when inside I clearly know and feel I'm not. 

I look forward to joining the community. 

B.

Welcome to our online support group, Smiles.  Our group is very small but we can and do help each other.

I have white matter changes on my mri but my doctor still has me diagnosed as cognitive impairment not otherwise specified.  Look up leucoairiosis.

 I also had an experience of not recognizing where I was one night while driving.  That has not happened again, however.  We have a lot of unusual things happening that the outside world, including professionals, are unaware of.  As I stated above, I am not interested in convincing other people.  I am only interested in taking care of myself and helping my fellow patients.  We have no one to rely on.  At least, I don't.

Iris

Hi Iris: 

Thanks for your post.  I have been looking for a long time for a place to learn, share, laugh and cry.  I'm finding the diagnosis very lonely.  I had a stroke 1.5 years ago (age 57), which led me to an MRI which is when I was diagnosed with moderate WMD.   It all sort-of made sense at that point.  The struggle with memory, organization and focus that is.  The stroke really sealed the deal, I am fortunate that it was a small one.  During my denial phase, I went to Mayo for a second opinion and they agreed with everything my local docs were doing as far as medications.  They deemed high BP as the culprit. 

The depression that goes along with this brain disease is debilitating.  It seems to ebb and flow.  If I could get a handle on that I think life would feel better.   Oh how I dislike my emotional incontinence. 

I look forward to new friendships out here. 

B.

Yes most of the time if I say things like I'm confused or I don't remember or have no recollection whatsoever often friends will say....well don't feel bad I don't either and it really feels like they minimize the diagnosis and what my life journey has now become.   I'm sure that it's difficult for them to watch a friend decline......

I have a friend that I thought would be in my corner and be a main supporter, but instead she seemed to be angry and tried to make me feel like it wasn't as bad as it actually is.   When someone you love says we're all going to die, it is what it is,  get over yourself.... My comprehension and my mind did not have the capability to deal with that.    Goes without saying she is very distant now.   So not only do we have to grieve through the process once diagnosed I also had to grieve for the loss of a friendship truly sad.  Probably still am.   Thanks for letting me ramble .....

Smiles, I fell into a deep depression when a geriatrician told me that I had to accept that I had dementia.  After a long time, I decided that I if I did have dementia, I was not going out like a victim.  I would do whatever it took to maintain my independence.  

It takes perseverance and developing a new philosophy of life.  It took realizing that the outside world, including professionals, had little for me.  I had to accept that my former close friends would not be there for me and that I would be alone on this journey.  My only hope and support is from the members of these boards.

  I think of myself as a Dementia Pioneer.  I am taking charge of my life in an uncharted way.  I rely on my friends here.   It is a struggle but I won't accept the alternative of being under the control of know-nothings.

Iris

Hello alz+, just want you to know that I am thinking of you and await your next post after the kids arrive to help.

My very, very best wishes and warmest thoughts are being sent to you from one Michigander to another who are (or will be) transplanted in Southern California.

No snow . . . . no ice . . . . all casual . . . . flowers grow year round . . . .  mosquitoes are MUCH smaller . . . .and the ocean!

J.

After a week of windy and rainy weather, we are back to our nice California weather and clear skies!

Iris

Hello dear alz+; I too have been thinking of you and looking for your next update Post.  So hope that things are going as good as they possibly can.

It is an earth shifting experience I am sure, but the end results appear to be blessings, some unexpected, waiting for you on the horizon.

Update from me who lives in Southern California in an abutting county next to where you are moving to:   First of all, the weather is wonderful!  It is 75 to 80 degrees and has been truly lovely.   You can warm your toes in the sun.  

Flowers are blooming, birds singing, and all is well . . . . each morning I see people out for their morning walks; some alone and some with friends, there are parks everywhere, and one can see folks, (mostly older), exercising or stretching in the parks; some doing Tai Chi. 

There are senior centers everywhere and their programs are awesome for many to take advantage of if and when they wish.  Classes in the centers abound with all sorts of crafts, music, singing, and again, Tai Chi, chair exercise, dancing exercise, Yoga, you name it - it is there.   Some attend just for quiet company and play cards, others for conversation and lunch and some choose to just sit quietly by themselves watching others.

There are community swimming pools in abundance, some are large indoor pools where there are senior water aerobic classes.  And of course .  . . . one can go to the park, find a favorite bench and just sit and feel the peace.   I like to sit on a bench facing the small child play areas and watch the little tiny ones and listen to their sweet voices.

At this time, no sweaters needed on a late morning, or afternoon walk.

You can do as much as you wish and as little as you wish.  Each day, each week, each month will be different and you will have a smorgasbord of choices to take or not take, including many restaurants for take out AND we have multiple grocery stores that deliver one's orders, so one does not even have to go out to the grocery store if one wishes not to do so.  Seems all the grocery stores, and malls and Target and Wal-Mart out here have those electric carts to ride on to save energy and painful joints, that too is a big plus for many.

One of my favorite things before the throes of deep summer:   To be driven to the ocean, park the car right near the sand and roll all the windows down . . . . (I like to drive down to where Seal Beach Pier is) . . . . that will not be that far from you.

I listen to the calming sound of the water and the waves breaking on the shore . . . . taste the salt on my lips . . . feel the soft ocean breeze on my face . . .. watch the gulls playing on the air currents and feel such peace being brought within myself. 

Sometimes, I see amazing kite surfers skimming and flying across the water; sometimes being carried up into the air . . . . I see boats in the distance and sometimes bring a pair of binoculars so I can see them better; sail boats and big ships in the far distance carrying their cargo into a port   . . . .Catalina Island is visible to the naked eye far in the distance; yet it looks closer than it really is as it is 26 miles away.  It always renews me.

So much waiting for you but most of all, Peace of mind and spirit once settled in; a quiet place, a serene place, your own room decorated and painted just how you want it and none of the angst about upkeep and maintenance with no background support or a friendly face when you need or wish it.  And of course, no snow and ice.
 
 I can imagine this point in time must feel unsettling, but I think as said, that you will find many unexpected blessings as things settle in.

Our thoughts are with you and I know I think of you each day and am watching for your next Posting.

 Soft hug and warmest of thoughts are being sent your way,

 J.

 Wow, Jo C, I live here and I don't do all that you do!  I need to get out more!  I'll have to make that one of my new year's resolutions.  It's hard to find like-minded people who want to get out and stroll without drama.

Iris L.

I am confused Jo. Is that what ALZ+ said or you. If she did that is so great and it made my weekend. 

Hello Michael, the bolded Post from January 26 was written by me and are my words.

alz+ is making a move from deep winter in Northern Michigan to be near family in Southern California.  She has a room waiting for her in her ex-husband's house and they get along well.  She stayed with him during her trip to Michigan earlier this year and had a very enjoyable time.   From what I understand, this is also near her adult children or at least one adult child.

The Post I wrote just outlines some of the local things to do that are simple and peaceful IF alz+ wishes to explore any of them once she is settled in and more comfortable.  She may not wish to do anything listed and that is okay  too.  It is all up to her and her comfort level.  She will find her own way of going about things.

Moving afar is stressful for most of us on various fronts whether there is a dementia present or not; but it will settle out and often brings those unexpected blessings I mentioned in my other Post.

alz+ is a wonderful writer and expresses herself so well.  We all await her next Post so she can tell us how things have been going for her as her daughter and son have traveled  to Michigan to help her get things sorted out and get things going for the sale of her present house. 

That is pretty much it, Michael as far as my Post went.

J.

Thank you for the clarification. I wish Her the best but I will not be able to reply to ALZ+ for a while as I will be leaving Tuesday and wont be back until March 5th.  

First - welcome to new member "Smiles"! Please note: there is no ramble here that is a bother. Your story is vitally important. One little thing you learn helps you can help so many other people. I don't know if cbd oil would help vascular dementia,  I'm sure you looked it up online, it would likely lower blood pressure and blood sugar. Another member used it for Parkinson's and it lowered his blood sugar and pressure so the doctors told him to quit the cbd because it was interfering with his medications for those things. I would have reduced my meds and kept on with cbd oil.

*******

I enjoyed reading the activity here and your kind thoughtful posts about my life. Thank you, it felt like a welcome sign.

My son and daughter came to visit and it was the best visit I have had with them in 20+ years. I signed power of attorney stuff and got them on my bank accounts and fixed insurance stuff etc. They went out and had fun and we all had a dinner out one night, the rest of it was low key and I went to my bedroom when I got overwhelmed.

Lots of laughing, still it was as odd for me as for them to be handing over the keys so to speak. I called it The Transfer of Responsibility from Keeper to my children. He came one night and we had a dinner and they talked privately which all seemed to think went well. 

I have been off kilter since they left and now we have super cold period which makes the dog bored and although exhausted my mind is racing and can't sleep.

So my plans iffy and out of my hands. I will have a bedroom the same size as the one I mostly live in now. The father of my children has this house which I hung out at for many years when I lived on the Russian River which is west of wine country in Northern California. My son live is SoCal, my daughter lives mid coast.

Former husband, I'll call him Old Sport, has one eye, afib, and seizures. We will be "helping" each other, that is the The Plan and we all know how plans go. 

I now wait for some things to be fixed at Old Sport's house and then someone will come get me and bring me out west, with the dog, so probably driving out there. He drives but panics in grocery stores so they think he can drive me to store and I will shop.

If my house is sold promptly here in Upper Michigan I (mentally) will have no place to go if things don't work out. If / when Old Sport becomes further debilitated, no one has considered that part much. They talk of "home health aid" and stuff.

Leaving my life here is esp hard because I wasted years in turmoil and was so looking forward to this summer here and finishing my rock gardens.    I miss my daily talks with Keeper and the leg massages and the comfort of his big warm body. I don't miss the anger and fighting and sadness.

I will reread your posts later, I want to think of this move as the transition it is, the decline is real, still don't find the condition so bad anymore. Have some Alice in Wonderland moments for sure but I enjoy them, see these episodes as seeing behind the veil.

lost train of thought - love you all - if anything of importance comes up I will come back to share it. Basically my skill of going into solitude when distressed kept 5 day visit easy to handle and easy for my beloved kids.

love and courage

Smiles :

many articles more scientific but this is short and to the point. The fear of THC is common in people who have never enjoyed cannabis and consider the "high" as more like a junkie than evening glass of wine. I am already altered, don't need to be more so!

The thing is the anxiety of not being able to count on my senses and thoughts can become toxic and the Ativan I was prescribed stops my digestive system at 1/4 prescribed dose. Not worth it. The oil with thc is very helpful for anxiety in my case.

If you are in a legal state worth it to go to dispensary. I have no idea if hemp oil is equivalent. When it works for me I don't FEEL stoned, I don't feel anything but find myself up, dressed and about 15 minutes after taking it. It helps me function, very subtle. I might not be able to carry on a conversation and 30 minutes after taking oil be chatting with a neighbor, that is the effect on me.

share your experience here, you matter and we can help each other.

https://www.therajoypharma.com/cannabidiol-cbd/medical/dementia-and-cannabidiol-cbd/

"Vascular Dementia

Vascular disease occurs where blood vessels are damaged and the supply of oxygen is at risk. If oxygen supply fails in the brain, brain cells are likely to die leading to a series of mini strokes (infarcts) and possible vascular dementia. Vascular dementia accounts for 20%-30% of all cases of dementia.

The mini strokes that cause vascular dementia are often so slight that they cause no immediate symptoms, or they may cause some temporary confusion. However, each stroke destroys a small area of cells in the brain by cutting off its blood supply and the cumulative effect of a number of mini strokes is often sufficient to cause vascular dementia. Vascular dementia and Alzheimer’s disease frequently occur together and they may often act in combination to cause dementia.

Vascular dementia

"

Treating Vascular Dementia With CBD

While the research is still in its infancy, there is promising data from the US National Institute of Health (NIH).

Vascular dementia is a general term describing problems with reasoning, planning, judgment, memory and other thought processes caused by brain damage from impaired blood flow to one’s brain. To effectively treat vascular dementia, a 2016 study by the US National Institute of Health (NIH) found that activating CB2 (cannabinoid) receptors in the brain helped recover better blood flow to the brain. Activating the CB2 receptors with CBD has increased brain cell activity and helped reduce brain cell damage commonly associated with vascular dementia.

Using CBD (Cannabidiol) to Treat the Symptoms of Alzheimer’s & Other Dementias"

I'm glad you had a great visit with your kids, Alz+.  Is your daughter still with you?  As you have remarked many times, managing our environment is vital to our composure.  I'm glad things are coming together for you now.

Iris

Smiles,  I have a particular "theory" of Alzheimer's and vascular dementia and how to treat both.  Each year, seems to bring a little more evidence that this "theory" is close to being correct.  Here is one good summary of a study from several years ago.

Oxidative stress in vascular dementia and Alzheimer's disease: a common pathology.

Abstract

Alzheimer's disease and vascular dementia are the two most common types of dementia with the former being the most predominant. It is evident that oxidative stress, an environment where pro-oxidant species overwhelm antioxidant species, is involved in the pathogenesis of both forms of dementia. An increased level of reactive oxygen species in the vasculature, reduced nitric oxide bioavailability, and endothelial dysfunction leading to vascular disease is associated with vascular dementia. In Alzheimer's disease, an increased amount of amyloid-beta peptide induces elevated reactive oxygen species production thereby causing neuronal cell death and damage. The recent observation that increased atherosclerotic plaque formation is present in the main artery to the brain in Alzheimer's disease, coupled with the association of vascular risk factors with this disease, suggests a link between these two dementias. This review will argue that Alzheimer's disease and vascular dementia are two extremes of one disease, thus assuming a hypothesis where the clinical conditions referred to as dementia are part of a continuum. We propose that the majority of cases share a vascular pathology and that oxidative stress is central to this common pathology.

The most important oxidant in the Alzheimer's disease and vascular dementia is peroxynitrite, among other things this oxidant restricts the blood flow and the transport of glucose in the brain which in essence deprives the brain of energy.  Essential oils including CBD oil contain compounds that scavenge peroxynitrite and reverse some of the damage that it does to the brain (in the case of CBD oil the peroxynitrite scavenging compounds include THC, cannabidiol, and terpenes).  In some other essential oils such as clove, bay laurel, lemon balm, and rosemary the most important terpene is eugenol.  

Here is some anecdotal evidence that peroxynitrite scavengers can be used to treat both vascular dementia and Alzheimer's disease.

Julie Diehl

SEPTEMBER 25, 2011 AT 9:03 AM

I have been using essential oils on my husband who has moderate vascular dementia in conjuction with low photon light therapy. The oils help to calm him during periods of agitation and nervousness and sedate him at night. Other residents in the facility where he is are lethargic all day and sleep until dementia drugs and anti-anxiety meds start to wear off at night and then become confused and agitated, while my husband is alert and walking the halls looking for something to do. I know the oils can’t change the course of the disease, but it is a better alternative than chemical restraints and antipsychotic drugs. Essential oils are healing whether inhaled or topical and I am glad to see that they are getting acknowledged for use with dementia.

 

https://www.youtube.com/watch?v=sKN3DGxl06o

 

https://www.youtube.com/watch?v=sb6g5-A1ljA

 

I am an optimist about this (one of my least favorite terms is false hope).  Alz+ has added greatly to our understanding of CBD oil for Alzheimer's disease.  There is not a lot out there regarding the treatment of vascular dementia, but the two diseases share a common element (oxidation) and should share a common treatment (certain antioxidants). Best wishes to you, Smiles

  

Thank you for kind words and encouragement.  I'm so fortunate to have found this "Connection" board.  Alz+ you have such big changes coming in your near future with moving to Cali.  Cheers to a smooth transition and settling in while keeping that stress level down. 

Thank you for the CBD information you posted, I will continue to research and more than likely partake.  I lose my thoughts and what I read so quickly that I've re-read and re-read this sights postings.  And what the heck is with the math and spelling skills?  Poof gone.  I would so love to hear each and everyone's story, is there a way to read historicals? 

Looking forward to getting to know all.  Lane, I love the concept of aromatherapy incorporated into a treatment plan.  Very cool. 

Smiles.

It is so good to hear from you, alz+.   What a terrific visit with your kids and so much got done.  Kudos to all of you. 

 It will not be long before things are settled.   I always think of the UP of Michigan as "home" of my heart; but oh my, I am so glad to be actually living in clement weather; it really makes a difference and even more so as we get older and more rusty from head to toe.  Heck, I think I clank as I walk.

 Keep us posted as to how you are and please do stay inside warm and toasty and out of the elements.  It is a doozy this week, but this too shall pass.

 Looking forward to hearing from you again soon.  

 J.