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being smart about wandering - go big or stay home!
alz+
Posted: Wednesday, January 3, 2018 7:16 AM
Joined: 9/12/2013
Posts: 3608


I was so proud of my Dad when he had ALZ and went on the golf course to chase down "people in a little car who only had sticks to live on," and took off his clothes and gave them to the golfers.

The security guards brought him home and my mother tried to shame him and carried on about her reputation etc. To me he was showing his nature, always help others in need. She was warned to prevent him future "wandering" - the world is inhospitable to someone with dementia enjoying a walk as I found out when neighbors tracked me down after I walked to saloon and then walked home. Yes it was below zero and dark, but the moon was out and I had fun and no harm was done.

Yesterday Keeper was in another shitty mood and left with the dog so I decided to walk to the pool. I forgot to put on a  sweater but had on a down coat and hat. I only got a little ways out of the driveway when the ski hill shuttle bus stopped, he opened the doors and said "I'll give you a ride." He drove me over and then said, You call for me to come get you to take you home. I like to see you walking with your dog in better weather but I'm looking out for you."

I shook as I walked into pool lobby from his kindness. I almost burst into tears! what a difference between having a door slammed in my face and being yelled at for trying to get out and do anything!

When I got home I was so tired I went to bed and slept 10 hours.

The negative words used to define our normal needs infuriate me. I looked into plane tickets and my daughter and her dad, my ex husband, are working on a plan to get me out there for a month or longer.

I may never come back here. I am fed up with living with someone who is always miserable, no time to waste. My leg could be useless in a year, why not live a dream?

all the things I wanted to do this winter were dependent on husband and builder making a place for me in the house and neither has, so I  am moving on (I hope).

The week I was so sick and lonely that I went no food no water was wonderful. I got to feel just how close end of life is and how much time I have wasted waiting for someone to help me or care.

Hospice nurse said to get more help traveling than I  think I will need.

any suggestions? has anyone used the escort protection service from airlines? I think I will ship a box of clothes instead of taking a suit case.

help me wander far and wide! 

I see myself on ex's front porch singing to the birds. It may turn out sour but we need to break the contempt held for our need to live out our lives and not just sit in front of a tv being "safe." Boredom feeds anxiety.

Help me break the rules! Go rogue! Question authority, reinvent your life, don't buy the sales job of endless misery. resist!



dayn2nite2
Posted: Wednesday, January 3, 2018 11:01 AM
Joined: 6/20/2016
Posts: 3462


It doesn't have to be "endless misery" but you don't need to be reckless either.  This man wandered from his house and was found frozen to death very near his home:

http://wtkr.com/2018/01/01/newport-news-police-looking-for-missing-man-with-dementia/

 

There is also the story of Nancy Paulikas, who went with her husband to the Los Angeles Museum of Modern Art in October 2016 - over a year ago - she and her husband each used the restroom and while he was finishing she went missing.  She still hasn't been found.

So whatever you feel about the safety recommendations you've received, you do need to admit that your judgment may not be intact and USE THEM.  Please.  Because you do not want to freeze, drown or die in some field somewhere because you wanted to "go rogue."  

It doesn't have to be all or nothing.  Why is assisted living the wrong thing for you?  You are upset by the miserable atmosphere where you're living but that wouldn't be the case in your own place.



obrien4j
Posted: Wednesday, January 3, 2018 12:27 PM
Joined: 11/18/2016
Posts: 451


Alz- it is not where you are but rather who you are with you, that matters. If keeper is making your life and your surrondings uncomfortable, unbearable at times and downright wrong by not giving you the love and comfort you need at this very crucial time in your life- when you still CAN do- imagine when you can't! Bye Felicia!! If your ex and your daughter are being supportive, I say pack what is most important for you and don't look back. Who knows what could happen during that time- but it sounds like life with the ex would be way more peaceful than with keeper. You got this, Alz, you can do whatever you set your mind to. You deserve peace and love, my friend. Go for it!

Now, please dont be crazy! day2nite2 is right, dont risk your life for a little fun- although if I lived next door to you, wed take care of eachother after tge drinkin and dancin!

day2nite2- I get where you're coming from- but I gotta say, at least for me.An assisted living place Never will be the right place for me- not if I still have the mind, energy, willpower and desire to live and I am happy at home.Alz still has a lot of life in her and now has a loving home it sounds, to go to.  Sorry, Im going to be brutal- at least the way I see it- assisted living, in our case, eventually means progressing to a nursing home within a few years and most likely, never going home. I think it's a place where we can be, until we die....no need to go there before time, as long as you have a good, viable plan. IMHO.

 


alz+
Posted: Wednesday, January 3, 2018 1:05 PM
Joined: 9/12/2013
Posts: 3608


Obrien - I get what she meant about being reckless and my judgment being altered maybe at times to not so reliable.

But the idea of being found on the side of the road is a lot more my style than living some place to be safe, shoveling whats left financially to a corporation.

I think dying in a "safe place" is over rated and my hospice nurse gave me permission to "do what I want". ha!

So I went through a bunch of emotions today, despair, pizza at midnight ... I guess that was it. I smoked a bud and thought, "This is so bad it's funny," and that is what always stirred me to write.

So I am going to write about this change in life, this is my title:

But Wait! It Gets Worse!

Just a working title, there have been a lot of things I find hilarious about this and I really enjoy writing. A project for the fun of it not pinned to hopes of getting published. Just to feel free.

My girlfriends from high school connected with me after I missed our reunion and bought copies of my last novel and have been talking about it thru online group we made. It has fired up my brain and I am thinking writing may save my life again.

My life.

I treasure my life like I never have before. My test experience with the no food no water thing a couple weeks ago really removed the anxiety about dying, which seems to have opened the cage door. I think taking some chances is ok, it is wonderful to know nature will take its course if allowed.

There will be no anger, Keeper was not cut out for this, we both knew it for years. He seems relieved and I am starting to feel it too.

*****

anyone have success traveling alone by air? tips?



obrien4j
Posted: Wednesday, January 3, 2018 2:26 PM
Joined: 11/18/2016
Posts: 451


 

Love the title,alz! Id definitly buy a copy! What was the last novel?? I am so glad youre fired up and ready to go. The hardest thing I guess, is all the 'figuring out' stuff. After that, comes the real living part. You got this, alz!


lisabramey
Posted: Wednesday, January 3, 2018 3:23 PM
Joined: 3/20/2015
Posts: 96


Deat Alz+,

I get you on this. Your a brave soul. All I want to do is cocoon. I hope you get to where you want to be. I will be following your adventure. Sorry, I have never flown or been north of the Mason Dixon Line. 

Lisa


Iris L.
Posted: Wednesday, January 3, 2018 3:34 PM
Joined: 12/15/2011
Posts: 18502


I think assisted living gets a bad reputation.  I looked at a few, and realized that assisted living is just a small apartment in which the resident is not responsible for cooking or meal preparation, housework, or laundry.  It's like living in a hotel or a cruise ship!  In fact, some well-to-do seniors do just that, live on cruise ships for the amenities.  If I had the funds, that's what I would do.


In the meantime, I am working on restructuring my household to limit food preparation, housework and laundry duties.  At different times, I had hired someone to help me in the home.  But I want to do this myself now, by extreme simplification of my home.


Alz+, I don't know which is better for you.  If you want to move to live with your ex-husband or your daughter, you will have to let them help you.   From what you have posted, it does not seem that you can handle the details on your own.  Pick out what you want to take with you, and let them move you.  I agree, ship what you want to take and limit luggage that you bring with you.  But realize, you will have new people in your life that you will have to answer to if you move in with one of them.  I realize that is a loaded term, but you will be living under their roof.  There will be a big adjustment period for both of you.  Be prepared!


Iris L.


 


obrien4j
Posted: Wednesday, January 3, 2018 4:39 PM
Joined: 11/18/2016
Posts: 451


I thought about living on a cruise ship. What a way to go, but I think at some point, you've got to settle down somewhere.
Iris L.
Posted: Wednesday, January 3, 2018 6:59 PM
Joined: 12/15/2011
Posts: 18502


Alz+, even though the winter climate in CA is milder than Michigan's, it does get cold and frigid at night.  It is not safe to go outside without appropriate clothing.  How do you think your ex will handle your going out by yourself in a strange neighborhood?  I can see this becoming an area of contention.  I know you want to live in a peaceable environment.  Is it at all possible for a local woman (or man) to come to your home to prepare meals and handle light housework and laundry?  If not, the other arrangements that you are considering might be better for you.


Iris L.


TayB4
Posted: Wednesday, January 3, 2018 7:41 PM
Joined: 8/8/2014
Posts: 886


Alz+, if you fly alone, I would advise that you use the special accommodations that airlines offer. You need to notify the airline when you buy your ticket. The airline will assign someone to guide you through the airport to your gate. They will take care of you on the plane, and help you on and off the plane if needed. Let them help you!
Iris L.
Posted: Wednesday, January 3, 2018 7:55 PM
Joined: 12/15/2011
Posts: 18502


Alz+, believe, me, I understand your free spirit dilemma. Why can't you just be allowed to be yourself, to come and go as you please, enjoy nature, enjoy your dog, and not have to worry about the realities of life?  Your life would be like in Hogeway, the Dutch Dementia Village, where the residents can do as they please in a safe and engaging environment.  It's a tough call.  Whatever you decide, I've got your back!


Iris L.


jfkoc
Posted: Wednesday, January 3, 2018 8:18 PM
Joined: 12/4/2011
Posts: 21237


Well I know you can fly from Houghton to Chicago on a milk run. Then you can deal with a totally impossible airport.

Why not plan way ahead and have your daughter come and fly with you. 

I want to read your novel!


BlueSkies
Posted: Wednesday, January 3, 2018 10:18 PM
Joined: 2/24/2016
Posts: 1096


Alz,  So understand your wanting to "go rogue".  Been there myself few times.  Unfortunately for me, I am now more like Lisa.  Just seem to want to "cocoon".  But so enjoy reading of your adventures.  Looking forward to book too!

My advice....do what makes you happy.  Whatever it is.


dayn2nite2
Posted: Wednesday, January 3, 2018 11:01 PM
Joined: 6/20/2016
Posts: 3462


I posted this on the CG board but here would apply also:  Lady in Roseville, MI frozen to death after she became confused at night and wandered outside in her nightgown.

An elderly woman found dead Tuesday morning on a school playground dressed in a nightgown, robe and slippers is believed to have wandered from her nearby home and froze to death, police say.

Roseville Police Chief James Berlin, in a statement released Wednesday, said the death of the 96-year-old woman, whose body was discovered around 7:30 a.m. lying in the playground at Dort Elementary School near 10 Mile and Gratiot, has been ruled accidental by the Macomb County Medical Examiner’s Office. The cause, officials said, is attributed to exposure to the frigid temperatures.

The woman, police said, had been living alone in the neighborhood and, according to family, had recently been diagnosed with early-stage dementia.

“The victim showed no signs of foul play, and it is believed that sometime during the night she became confused and decided to leave her home,” Berlin said in a statement. “Once out of her home and inadequately dressed for the current elements she was soon overcome and succumbed to the cold.”

http://www.detroitnews.com/story/news/local/macomb-county/2018/01/03/elderly-woman-froze-death-playground/109123686/


BlueSkies
Posted: Wednesday, January 3, 2018 11:34 PM
Joined: 2/24/2016
Posts: 1096


Oh yes, forgot to add... I do agree with day2nite2 too.  Do what makes you happy as long as it is safe.  I thought that was a given, but realize now it is not.  Stay safe Alz, no matter what you choose to do.

Also wanted to add...Iris had a good point.  If you are under someone elses roof, you have to answer to them.  Would be a big adjustment for you.  Something to think about.  


Canada111
Posted: Thursday, January 4, 2018 12:50 AM
Joined: 8/22/2016
Posts: 263


Two weeks ago you were at deaths door and puking your brains out with shingles. Now you're better. A lot better. My advise is to hold onto that. You may not have it better in California with an extremely busy daughter, or an ex who is sick himself. I understand only too well that Keeper is not that great. So what else is new? Who is the perfect caregiver? Only the ones in videos that are feeding their loved ones with a spoon. We all read the caregiver and spouse of forum, and know only too well that they are miserable and full of complaints and longing for it to be over already ("Is she in Stage 7, is this finally the end?!!). Oy vey.

1. Be realistic if you can be. The positives in your life now: You do have a support system in place, but not a great one. You have hospice palliative care in place, a good doctor you're seeing now that has helped you already, Keeper who at least drives you to appointments, and does stick up for you, as he did at the dentist (he took you to the dentist and I assume drove you to the doctor). What's missing? Is it warm enough in your house? Does the refrigerator and stove work? Ok. You need someone who shops and prepares food for you, someone who helps with housework and keeps your home tidy. It's ok that people in your area are watching out for you. You're lucky they notice and care.

2. The negatives: It's cold where you are (here too, very). Keeper is an a-hole but he's not as bad as some. Trust me. I know. 

3. Your ex-husband is the father of your children and you were a family. Maybe the love is still there, and together you can make this work. But be prepared, because it could get worse after the honeymoon. He may be worse than Keeper as far as partnering with you in mutual care if you progress. Watch out for the grass is greener syndrome. Yes, it will be warmer in California and that will make life easier for you.  Before you go, investigate hospice there. Put your money into hiring a part time housekeeper, cook, someone who shops, and can can take care of you and your ex, as you said he also isn't well. Don't depend on your daughter too much. She may not want to do that much. 

4. If you have the money, now is the time to hire someone to come to your home now at least 3 times a week now, and let her do the food shopping (give her a list or go with her), the cooking and cleaning. Let her help you organize your meds. Call the agencies and interview. 

Of course, assisted living is not for you. That's obvious. But going to California requires some serious planning beyond notifying the airport that you need an escort, and sending some boxes. If your daughter is willing to come and help you make the trip, and help ship the things you want and will need, then you'll know that she will be there for you at the other end. If she won't do that, and you simply show up, it could be disaster.

I think you were humoring us with the trailer park idea. Thinking out loud. 

In the meantime, you have your incredible sense of humor, some of your strength back and an unbelievably fantastic title for a book. You are one funny lady. You have girlfriends who are encouraging you to write. A supportive audience and fan club. What could be better than that? 

So write. You can at least write a chapter and post it here for us to read. 

I'm starting to understand that your attitude is what is keeping you going. Through high and low you persevere with your humor and keen observational skills intact. You may outlive many of us here dear one. Just saying. 

I hope someone is archiving all your posts. You are brilliant. Bless you. 

What is the title of your novel? I want to read it.

 


llee08032
Posted: Thursday, January 4, 2018 7:45 AM
Joined: 5/20/2014
Posts: 4408


Alz+

I think a month away to gain perspective and objectivity is a great idea. Even just a few weeks away to put some distance between you and Keeper. Who knows what it will morph into or where it will take you in your traveling (and wandering mind)? If the opportunity is presenting itself perhaps you should jump on the bandwagon and go with it. You've been contemplating this for some time. You won't know if the grass is greener on the other side unless you have the experience. 

The luggage, the details, assist at the airport can all be worked out. 

What choice brings you the most comfort? Makes you feel at peace?

Love you!


llee08032
Posted: Thursday, January 4, 2018 7:48 AM
Joined: 5/20/2014
Posts: 4408


Ps: Have not been able to read a book for close to 2 years...but something you wrote could give me the push I need. 
alz+
Posted: Thursday, January 4, 2018 10:03 AM
Joined: 9/12/2013
Posts: 3608


Dayn2night - thanks for caring so much and being protective.

The news stories of old women found frozen are sad, the stories of people found dead in their warm houses are just as sad. My Dad did one night end up in a golf course pond calling for help with a deaf wife oblivious. So he was in  his own home with 24 hour care, gated community with security patrols. Someone walking a dog (!  
! ) heard him call for help. I was so proud of him calling for help, my mother was again ashamed of him and angry.

Hypothermia and death is pretty easy, just saying, out of types of death not harder or more tragic than laying in a nursing home bed unattended for weeks with bed sores.

anyway - my son is going to find a way to get me and his Dad - the grandpa - to one of his son's baseball games! (if I get out there).

OK daughter is finding easiest flights and will set up the escort deal. Shipping my clothes a couple days before I leave. Understand the rules of ex-husband house and daughter-in-law's house.

Dress appropriately. Iris, I lived in northern california for 20 years and know the chill! we used to have rainy season. I am (if this happens) going to be where the big fires were and the next earthquake.

Canada - you make ME laugh. Keeper is a cool guy, he is not cut out for guessing what a person needs and does not enjoy it. The ex-husband is awful - but so awful I am still laughing at him as are our kids.  He is against rules, has afib, one eye left after stroke, and is at the brink once every 6 months from one thing or another.

Both husbands are the kind of men only women like me marry.

This morning Keeper is more excited about me going away. The thing will be if I am "writing" about my adventures with Alzheimer's then the worse things are the better the material! This is the key to me making the trip without ending up in a psyche ward or arrested. 

I have had police called me in a hotel for looking for coffee after midnight in the lobby. When I was left at an ER in Palm Springs 4 years ago and they found out I was there alone they gave me an IV of something that must be illegal outside a hospital because it was heaven. The ER was packed and there were rows of us on gurney carts in the hallway. I managed to joke with people for over 7 hours who were coming in and being treated. We could not see each other but we were laughing, I was trying to order us take out, just so happy.

If I do not have cbd oil I will be a porch sitting drooler within 3 days. This is the thing making me want to live. It is all legal out there now but will it be the right cbd oil?

Plan is to leave mid February. Lots of time to panic and practice looking normal for TSA agents.

Obrien - think cruise ship. Someone suggested the trans atlantic deal where ships go for next season. Maybe we could have an alzheimer cruise with no educational aspect, just a party boat. Yes!

   



Iris L.
Posted: Thursday, January 4, 2018 4:21 PM
Joined: 12/15/2011
Posts: 18502


Alz+, it is an encouragement for me to read your post.  You are a breath of fresh air!  I will always think of you as the poster woman for the dementias!  You still have your own mind, even if it is failing in some ways.  I am in my own crisis, but hope springs anew after your post.  


Iris L.


BlueSkies
Posted: Thursday, January 4, 2018 5:00 PM
Joined: 2/24/2016
Posts: 1096


Iris, sorry to hear you are in crisis.  Hope things get better for you soon.