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Words, Like Life Jackets...
Posted: Friday, September 11, 2015 5:03 PM
Joined: 7/24/2015
Posts: 3020

Sometimes people do not realize just how hard of a struggle daily life is with dementia. The tiny missing pieces that make every small task a monumental struggle. The search for the bathroom, the search for my clothes...trying to figure out how to put them on. The internal struggle to do each task is more work that I have ever done in my life...and every single time it is the same struggle all over again. There is nothing that is not a hard time consuming struggle. It is tiring.

And you don't sleep anymore. I average about 2 hours a night these days.

And then there is the physical discomfort that you cannot name or locate...much less fix. It generalizes and feels very much like a heavy cloud pressing down on your head that you want to push away and duck and move out from under. Indeed, my inner me wants to flee out the door and run...and keep running until my body cannot run anymore...and then keep running some more. Instead I pace, and walk around and around...if there are small tasks to do, I will do them. 2AM and I was doing dishes.

Then there is the noise. Ack. Everything makes noise. The sound of the fridge, the washer, the dryer...the TV, the baby, my daughter talks to me...and it is like cymbals crashing in my head. Words like spoons stirring the last of my brains into mush. Try to go outside and there are cars, and trains, and omg the planes keep flying overhead ripping my brain in half...even just the wind in the trees.

And EVERYTHING moves. Why does everything have to move all the time. The baby, and the wild pattern on the rug, the TV...and daughter. I long for a plain white wall in the most silent room.

Add to that the onion layer deepening realization that I am going to die. That takes time and silence to process, in a brain that processes things slowly.

Just when you think you have a handle on your daily life, there are those other things that you have to show up for where you are confronted time and time again with the reality that you have been forced to be the face of dementia.

You go out to appointments, and providers who know you dx now treat you differently...what you have to say no longer no longer matter. And you have no real choice but to say, hey...I am still here.

Then you venture into the social world, because they say you need to socialize to keep your brain going...and again, are either forced to be the face of dementia as you struggle to speak, to follow conversations, and to just BE who you always used to be.

You can see in their faces that look, that look sinks me...their confusion, their concern, that turns into their pity...this poor pitiful creature I have become.

You try to go other social routes...and you are told BOTH, your writing is bad (go home)...and your writing is so good you cannot possibly have (so go home).

At every turn in every day you are reminded over and over again, unrelentingly so, how your life is you will never be the useless you unwelcome you are...what a burden I have become (even to my own self).

Until you become raw. Until it feels like you are have been skinned...and still you must smile, still you must find some reserve of warmth, and everyone makes sure that even though you are the one going through this, you still need to be there for them...they need my understanding, they need my patience. I cry a moment for the small reserve I have that I need for myself, and I give it away for those that apparently need it so much more than me.

The negatives are so unrelentingly numerous...that it weighs on you like rocks while you are trying to keep your head above water. You struggle constantly peddling faster and faster to keep your head above the surface...while the rocks threaten to sink you. Every day you sink a little further from the surface. And then, out of nowhere comes a voice so kind to remind you that you do in fact still touch others lives in a meaningful way. That even in the glory of your difficult awkward words, while your whole being is a walking apology, yet another voice reminds you that you really do still have worth as a human being.

Words come like life jackets...and make it a little easier to keep your head above the surface.

Words come and you well with tears of gratitude at strangers whose hearts you connected with for but a brief moment in time. Words that made all the difference.

Thank you for touched my heart deeply...from my heart to yours, thank you.


Posted: Friday, September 11, 2015 5:52 PM
Joined: 6/3/2013
Posts: 915

Is there a 'like ' button?
Posted: Friday, September 11, 2015 7:06 PM
Joined: 6/22/2015
Posts: 324

This is the place we come to cry together. I'm sorry. I send you my Alz-connected hugs I have been finding them a sweetness.
Posted: Friday, September 11, 2015 8:50 PM
Joined: 10/11/2014
Posts: 167


Posted: Saturday, September 12, 2015 7:52 AM
Joined: 5/20/2014
Posts: 4405

Is there any way you can control some of the environmental stimuli in your home? Turn your bedroom into your retreat room? Soft wall hangings to buffer noise? It sounds like you are on overload. I am recognizing more and more how noises/movement impact me and seem to startle me at times. Can daughter help organize clothing and label drawers etc? I wonder if there is something like pictures/instructions of how to put on clothing, pants, shirts etc? A way to set up outfits in closet for each day of the week? Day clothing, night clothes, left & right shoe, etc? Perhaps have a talk with daughter, gently telling her of the need for quiet and not talking? Maybe letting her know how to tell your on overload? Telling her you need to walk away sometimes and have space and asking her to respect your needs for calm, organization, assist etc.

Posted: Saturday, September 12, 2015 7:57 AM
Joined: 5/20/2014
Posts: 4405

I am concerned that you seem to be taking too much on when you are the one needing help. Is there a good woman friend that can help you out with some of the practical things your struggling with?
Posted: Saturday, September 12, 2015 9:07 AM
Joined: 7/24/2015
Posts: 3020

Thanks everyone,

One of the challenges with younger onset is that we are the ones supporting others. I wish my daughter was older.

But we are only where we are. I am finally getting into place some good supportive professionals. I have a great doctor...and I just got an appointment with the best neurologist they know of. I have the best meds. I have a great ILS worker who grew up caring for her gramma with it. I have good plans in place. And I have an out that the professionals all support me in. I also have a chronic illness support group that is very wonderful.

But that doesn't mean that the journey from here to there is not a rough one.

It is sort of a Midwest proverb of making do with what you got.

I don't really have any space to get away...and I am very much on overload. I just got I am hoping that will help. And soon classes will start for baby with daughter and I will get more breaks...which will help too.

Thanks for your kindness and support.

Brooke Marie Mae
Posted: Saturday, September 12, 2015 4:48 PM
Joined: 10/18/2014
Posts: 32

Posted: Saturday, September 12, 2015 7:50 PM
Joined: 9/12/2013
Posts: 3560

Your writing is really good AND you are still not causing huge complications so you have not been relieved of duties. (has anyone tried faking incompetence to get out of some of this stuff?)

The noise - for me - is also the CLOUD noise, cell phone towers, radio waves, digital everything. The little red lights on at night, that always humming background. When I am around people all who have their faces in their phones my skin gets the creeps.

yes, the reconsidering the approaching end of life and all the mental maneuvering on that.

Did anyone else expect a kind of Send Off Party to happen? My friends who had cancer got huge vacations with relatives and friends chipping in. One friend went to Ireland, another had a MONTH in Barbados during our winter, and then a month at lake in summer in a camper.

Some how I thought my son and daughter or ... who ever was left .... was going to send me a ticket for a big group cruise. I worried if I could find my way around a ship anymore, what would I wear? Nothing.

Nothing. I think 2 people said, "I'm sorry to hear this," and hugged me. Now I could not swing a vacation, manage a cruise, travel by plane or car. I missed my terminal illness vacation and my book awards dinner!

And I am still involved in getting house fixed! ACK!! Life just keeps asking for more but I am kind of laid out. I think the old ticker was wound too tightly and the spring is shot. I have zero energy - waiting 8 days until heart tests.

You described the weight really clearly, and the KIND words that come from strangers on boards or in a grocery line, a smile, all that stuff just makes me want to go another day.

Posted: Saturday, September 12, 2015 9:39 PM
Joined: 7/24/2015
Posts: 3020

Like you, I got much of nothing. The other day, I met a woman with stage 4 cancer and she was sharing how she has theme parties every week. And the way she was sharing filled me with so much joy for her, I was on a cloud all day.

I don't know how to (plant the seeds that will) turn around the Alzheimer's world...where we are seen in the same light as those with cancer. I can only hope one day.

The disease (and eventual death) is not near so bad as the marginalization.

Posted: Sunday, September 13, 2015 9:25 AM
Joined: 12/7/2014
Posts: 49

Sun, you write beautifully and movingly. Your insights help me gain a little more understanding of what my wife is experiencing and will, I hope, help me be a better care partner. This is already giving me ideas of setting up a room for her as a Fortress of Solitude (from which she can emerge with her super powers renewed to be used only for good). It is helpful to know how even small things like led lights and colors can be a source of agitation (kryptonite).

We have attended many cancer related support activities over the years as my wife was an oncologist. Shortly after her diagnosis, while listening to speeches at one such event, I was struck by the repetition of the word "survivor" throughout The many moving stories offered a message of hope which many can't see in an alz diagnosis. But there is always hope. We hope for a cure (for our kids if it's not in time for us)! We hope for drugs that delay the progression. We hope to spend quality time together and with our sons. We hope we can help be part of the solution by raising funds, awareness, and example. I think as more people are affected in the coming years, awareness will grow inevitably. Change will come inevitably as it has with mental disease and cancer.

In the meantime, we took Alz+ words to heart and start each day with a new mantra: "there will be many new challenges ahead, so let's start with alot more hugs."

By the way, we're going to see the Redwoods in CA at the end of the month. It's not Barbados, but we're very excited.

Posted: Tuesday, September 15, 2015 11:53 AM
Joined: 9/12/2013
Posts: 3560

Yes, a pleasant vacation!

I am still stunned by lack of sympathy (right word?) after my diagnosis - but in my family there was no sympathy or physical care for me ever. Left alone as a child in hospitals! Nurses would ask, "Where is your Mommy?" and I would say "I think she is busy."

But the silence of family, even most cousins, ZERO! My son's wife's comments let me know I was to take my "DRAMA" out of her house.

It affected my son, this idea that having feelings, being sad, crushed, fearful fall under their NO DRAMA law so having feelings is not allowed in his home.

Had a recent small eruption of that over telephone, where my tears over current predicament and illness was stopped with a "Thanks for ruining my day!"

Today I sent him an email and said, "Ok, no "drama" at your house or phone calls, and no "contempt" at my house - or in phone calls.

Maybe I will regret it but maybe not. Maybe I have been too kind about the people who do not "get it" or who are mentally incapable of providing care? One thing to refuse to help, another to be crushing my heart.

Getting help from women's shelter and lawyer on how to go it alone. This is a new one for them, the first dementia woman calling for help. Most of us can not call if they are in danger - or just fed up with neglect.

Will I get a Post Divorce Cruise? No. But trail blazing helps me keep going.

Maybe we should all host a bring your own party for ourselves, to share good memories and wish us bon voyage! Hand out papers for each person to fill out how they will help! Ha! Hats and party horns.

Posted: Tuesday, September 15, 2015 12:07 PM
Joined: 9/12/2013
Posts: 3560

In order to do this and not remain in a state of anger, I keep focused on how WE shall BOTH be so RELIEVED when Mister is no longer stuck doing what he is NOT CUT OUT FOR.

Yes, this is really good for BOTH of us! see the fresh sun rise? See the new dawn? Just be real quiet and before too long you will have all the time in the world to read when you want and you can type all day on your computer forums and not have to hand a plate of food to me or clean after yourself.

Think of having your way every minute! You'll love it!


It is ridiculous for us to be living in same house while this is going on, however he is pretty sure he can just go to court and say I am delusional, or as he told nurse at ER Sunday, "she is dementing pretty fast" as he lays his paper trial in every record he can.

Anyone else get a divorce on dementia? Send me some advice.

Am I foolish to not just hide in my room all day so I get a ride to church on Sundays, the dog walked, grocery shopping done? I can't tell.

It is going through anyway so if I live long enough I can report from trenches any helpful knowledge I acquire.

Posted: Wednesday, September 16, 2015 7:06 AM
Joined: 5/20/2014
Posts: 4405

((((alz+))) You will get through this. I am glad to hear you have been consulting with attorney and the woman's shelter. This is a complex legal situation. However, if you can't get a divorce some way you should not have to live with him and there should be protection for your property rights and his having no say at all in your care! Protect yourself in every way you can alz+!
Posted: Wednesday, September 16, 2015 7:31 AM
Joined: 7/24/2015
Posts: 3020

((Alz+)) You really will get through this. In the law, possession is 99% of the law, so that he is leaving is a good sign that you get the house. Claim also (in the paperwork) how you need the house because of the dementia you need to be in a familiar place. Be prepared to lose everything else to keep the house though. Your state is an equitable property state...means rather than half and half, both parties need to be equal.

You can also divorce without attorneys in a joint divorce. You fill out half, he fills out half, you both sign...and as long as you both agree to the division, that is what the courts grant.

There are services that can help you with transportation, like medical insurance...which if your monthly income is low enough you should apply for medical assistance through the department of human services...that will help greatly with medical expenses. They will also be able to provide a PCA (person to help) to take you shopping etc. Eventually you can get ILS as well, they will help you with bills and everything else.

There may be a low cost transportation service in your area that provides transportation to disabled people at reduced rates. Med insurance will get you too and from doctor and I even think to and from pharmacy. Grocery stores will deliver.

I think you already get rides to church, talking to the pastor may reveal more rides and yard help and help with shoveling. My mom gets a lady from the church to visit and give her communion. It is worth it to check with them.

Through medical insurance, you can also get a Care Coordinator who will help you with making appointments and what make it all work.

From the mental health side, if you have a dx, you can also get ARMHS an ILS person, and they can help you navigate all the resources to keep you living in your home.

Hang in is impossible to see how it will all work out from where you are standing, but as soon as you start to move down that path these things will start to open up and become visible to you...and you will see that the sun really does keep rising each day and that you really will be ok.

You have made it this far...and this part is the hardest part.

Remember that saying about teabag never know how strong you are until you are put in hot water. Your ability to keep rising above all this is remarkable and really inspiring.

Hang in there.