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love and courage at end of life
alz+
Posted: Wednesday, December 20, 2017 3:44 PM
Joined: 9/12/2013
Posts: 3608


My situation has become unbearable. My husband is very miserable around me and lets me know daily. I can not stand it anymore.

I am devising an escape. This is the end of my life, next year I may not be walking at all, this is my last chance to cut the unwanted baggage and give myself a place to recover my sense of self, to prepare for end of life by processing all these years of ... waiting for the good stuff to happen.

My high school friends have responded to my request for ideas on where I could rent a small apartment and enjoy the winter in a sunny place. Arizona keeps coming up and renting a regular apartment in some places is 10% of staying in a hotel.

I have been saying for years "I want to die in peace." I can not find it around someone who will not help me and who is so unstable.

when love is low I need a lot of courage. I have had my heart broken enough times to know it wears off and I owe him nothing more.

He needs help but refuses to admit it much less get it, (everything is caused by me) so being respectful of that I am going to respect myself. End of life wishes are sacred to me and if he cannot respect and honor this need for peace in my home now, it can only become worse over time.

It may take a month to figure out how to do this. I am off kilter now because of the shingles return and the antiviral meds but I do know I need this. Will I come back? I might if I can have my house back but I don't think so. I loved living here, but it is not love in this house anymore.

If he would get some help...but he won't. He is cheerful at the idea of me leaving for a few months, that reaction is sickening but I don't have time to care anymore. Clock is ticking, I long to find my peace and die in peace. I am going to try for it. Even with poor hearing, one good eye, anxiety, pain, and one weak leg I want to leave. I want to find out if it is possible. There is no extra time, and no time to waste.

Cheer me on. This is incredibly scary but staying around an angry man is worse. Hospice nurse comes tomorrow, will talk to her about it.

when love dwindles it takes a heap of courage to move on, esp with dementia and a cheap casket as the final resting place.

if not now, never. cheer me on.


alz+
Posted: Wednesday, December 20, 2017 4:04 PM
Joined: 9/12/2013
Posts: 3608


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I do not think Alzheimer's destroys the mind or annihilates the very self.

In fact this illness is going to be my chance to learn to feel my feet on the earth, to forgive myself of many mistakes, and free myself from the past. This is my time to say "I deserve this time to "seek peace and pursue it" as the Orthodox service says.

Unfortunately it is often the worst memories that stick the hardest. There is nothing that matters to me more now than giving myself a chance to be a little selfish and find a view and relax. I deserve a peaceful end of life, and if it is not possible I want to have the peace of knowing I tried my best and never gave up on making love and kindness shine down on me.


jfkoc
Posted: Wednesday, December 20, 2017 5:56 PM
Joined: 12/4/2011
Posts: 21237


I really think you are going to need some  help if you are going to leave. Someone to help with logistics. 

Please ask to speak with your Hospice social worker asap. Talk to them about what you need. Tell them to help you work through options. 

Peace is important. So is someone(s) looking after you. Your dog is important too. Maybe it is time for AL? Have you checked your area for this? Will you need medicaid? If so have the social worker get this lined up for you.

Bottom line...plan for worst day, not the best. 


llee08032
Posted: Thursday, December 21, 2017 5:00 AM
Joined: 5/20/2014
Posts: 4408


Perhaps planning this out might be easier and less stressful from ex husbands house? Have you thought of moving near daughter or good friend's? Arizona is hot but do you know anyone there? 
alz+
Posted: Thursday, December 21, 2017 6:16 AM
Joined: 9/12/2013
Posts: 3608


I found a trailer park in desert with a hot mineral water pool for swimming. It is outside a town I  visited for years.

the trailer is $15,000.  It is the closest to assisted living I can stand as it has a club house, shuffleboard, group movie nights, a giant hot mineral water pool and a view of the mountains.

It is close to a grocery, and people are going to the grocery every day if I needed a ride.

Keeper has been elated since I showed him my little shack online. He is telling me he will "support me in finding my peace". ha!

then he interfered with my antiviral meds and I missed the pill last night and the shingles have gained steam. woke up to my back itching like crazy and more blisters. Guess I fell asleep so hard and did not wake up to pee or I would have seen the pill on top of the bottle as I  have it set up.

I can not bring this house back to being my home  and husband is not capable of caring for me. Leaving the dog is something I would never have done, but this is finding a place for me to be alone and start cutting ties to the world of struggle. Are we really supposed to be extra cautious at this point? if not now, never.

I am getting the sense I better keep this idea to myself. I just can not complete my preparations for leaving this world around angry or incompetent people. 

This place also has RV parking so my cousin and her wife could visit.The summer would be brutal so maybe it is at least a place for a few months of heaven. No on is taking me on a trip, no one is asking me to move near them. I find joy in the prospect of abandoning ship.

what can go wrong that isn't going wrong now? I will find out if my son will allow me to visit the place and buy a trailer. so far no one is being enthusiastic and no one is offering any alternative.

now I have to deal with shingles pain and itch and  no swimming and no walking and an ill tempered man in my house. what can go wrong here? catastrophe.  I give myself high marks for finding an alternative to assisted living.

going rogue.



Michael Ellenbogen
Posted: Thursday, December 21, 2017 7:23 AM
Joined: 11/30/2011
Posts: 4456


alz+ - I am really sorry you must deal with this and are feeling so alone. Please let me know if you want to talk. Not sure I can help but it may be worth bouncing some of your ideas with someone else.
lisabramey
Posted: Thursday, December 21, 2017 9:25 AM
Joined: 3/20/2015
Posts: 96


Dear Alz+,

I have no sage advice to offer you. I do though wish you all the best.

Lisa


BlueSkies
Posted: Thursday, December 21, 2017 10:28 AM
Joined: 2/24/2016
Posts: 1096


Thinking of you alz+.  Sending you lots of love and courage...
Iris L.
Posted: Thursday, December 21, 2017 3:31 PM
Joined: 12/15/2011
Posts: 18502


Alz+, yes, you do need peace at this time.  Whatever you need to do to achieve peace is okay.  I had the thought that your daughter was staying with you now.  Perhaps I am mistaken.  Please, be diligent about taking the medications that are helping you.  


Your idea of moving to the trailer in AZ sounds good.  Many snowbirds have that idea.  How to make it happen will be a challenge, but you can do it.  Enlist help.  Keep thinking of your end goal, to have peace.


Iris L.


alz+
Posted: Friday, December 22, 2017 12:10 AM
Joined: 9/12/2013
Posts: 3608


Iris - you get what I want to regain for first time in my life,  real peace. My daughter lives in California as my son, she does visit once a year but when at home she is busy extreme and so is son.

****

I have gotten very sick, hospice nurse came today and we had the visit in my bedroom as I could not stand up. while she was here I developed a headache which came on like lightning. Then abdominal pain, then nausea.

tried to get thru visit, the shingles had enlarged because my pills were "rearranged" by Keeper so I took one less or one extra or none? she was concerned this was about a reaction to the pills.

we managed to discuss no food no water and would I be in trouble if I started now, is there some law, would it suicide etc. She asked some more about the shingles and when I took last pill. "When was that?" I don't remember. "Yesterday?" how long ago is yesterday?

then the headache got so intense I could no longer speak, only moan so she went to speak to Keeper. Then I was throwing up in bathroom, eyes were pouring water, my head was breaking, and vomit shot out of my mouth. She heard all this and wondered if I have become allergic to anti-virals, heard her say  she would call my doctor. 

The headache and vomiting plus nerve pain escalated! I laid on the bathroom floor moaning, yelling and screaming could not stop. had migraines most of my life and never had to scream like this. I have no migraine meds anymore, was totally incapacitated for over 2 hours, crawled to my room and the dog came up and laid by my side!

she comforted me and was interested in the barf in the wastebasket. 

I went back to bathroom, got hot wash  cloth and put it over my face and went into chills. figured something was collapsing, the pain in my head began to ease. I took a couple puffs of purple kush, got back in bed and took an Ativan - have not used one in years, it put me to sleep.

Just woke up. Took another anti-viral, if I get headache and vomiting again - it is the meds. 

****

well it put my trailer dream off table. considering no food no water as I do not think anyone is going to move me anywhere. maybe I already said this? so my safe room is now my trailer, the tub is my hot pool, and my view is the road out my window.

this is my first extremely rough PAIN patch with nothing to look forward to. I do have her help should I go no food or water. My speech has gotten deformed, stuttering and then not being able to stop the stutter. Chills and weak leg are constant.

maybe tonight i will come up with a reason to endure more of this. I never wrote the letters I wanted to my grand kids.  

maybe nurse will call back with an idea. right now I went off all social media and not taking calls/texts or reading emails. 

my high school classmates have been saying GO FOR IT, and I think last week I could have. Maybe too late. Head starting to ache again, will be off line awhile. Might be med allergy. when choice is eternal burning painful itching shingles with migraines, why would I wait to do no food no water. that week then would be my time for peace, forgiveness, preparation. Nausea starting now with belching.

I gave up meeting the qualifications to have orthodox funeral. It will be ashes in a wooden box buried somewhere when someone gets around to it. 

I lived most of life in pain and have always had to treat myself, comfort myself . have been left for dead 3 times in my life, this feels like more of same.

I just ate some yogurt and had some water, took the cbd oil. hope to sleep all night now. the shingles feel like painful marbles that itch, never stop. I use white vinegar compresses which cut the distress in half. we will see. want to live to talk with our bishop who is coming next week. 

 Keeper knew a  man who had eternal shingles, suffered for 3 years, ex military guy, think he finally shot himself.

merry christmas and happy new year.  





Michael Ellenbogen
Posted: Friday, December 22, 2017 7:33 AM
Joined: 11/30/2011
Posts: 4456


Alz+ You asked about this “we managed to discuss no food no water and would I be in trouble if I started now, is there some law, would it suicide etc.” This is a very touchy subject. There are laws but they are also not clear and in our favor. What state do you live in. Do you already have something prewritten that these were your issues?  If this is the route you choose I may be able to have you speak with my Lawyer at no cost to you but I am not sure what could be done. I do hope you are also asking for pain meds so you do not need to suffer. My prayers are with you.


llee08032
Posted: Friday, December 22, 2017 8:44 AM
Joined: 5/20/2014
Posts: 4408


So wish you were receiving tender loving care from keeper when you need it most! I can't help but feel anger that your not being properly cared for and feeling alone. Sending you many prayers and the warmest of thoughts. May all the good that you have done and all the gentle care that you provided in your work as a massage therapist come back to tenfold! I wish I was there to make sure you have pain and antiviral meds, fluff the pillows, tuck you in, run warm bath, console and feed you! Love in spirit, Llee
Iris L.
Posted: Friday, December 22, 2017 3:28 PM
Joined: 12/15/2011
Posts: 18502


Oh, Alz+, I am so saddened to read that you're doing worse.  I hope that the worsening is due to the medication, because if you avoid the medication then you should feel better.  I hope that non-drug pain relief will help.  Non-drug methods may sound simple, but they can help; I have used them in the past.


When I was very ill I could not eat much more than applesauce and instant oatmeal, but I made sure to stay hydrated with water and tea.  Sleep is also a great medicine; sleep as much as you can.  


I don't know what requirements you need for Orthodoxy.


Feel better soon!    {{{{{{{{ Alz+ }}}}}}}}


Iris L.


Moderator
Posted: Friday, December 22, 2017 3:38 PM
Joined: 12/7/2011
Posts: 147


We encourage members to call our 24/7 Helpline at (800) 272-3900 to talk about some of these difficult topics. The helpline has Care Consultants that specialize in Alzheimer’ disease and other dementias that are available to offer support, information or provide a listening ear.

Sincerely,

ALZConnected Moderator


jfkoc
Posted: Friday, December 22, 2017 4:38 PM
Joined: 12/4/2011
Posts: 21237


I hope you feel  our love surrounding you.....
Unforgiven
Posted: Friday, December 22, 2017 5:01 PM
Joined: 1/28/2013
Posts: 2659


I'll second what jfkoc just said.  We all love you hear in our hearts, and you are not alone in spirit.  And your dear dog is there as a physical surrogate for all of us.  Dogs just seem to understand when we're in pain.

I really hope that this pain passes, for you would be greatly missed on this board.


Canada111
Posted: Friday, December 22, 2017 9:44 PM
Joined: 8/22/2016
Posts: 263


So much love pouring out to you Alz+. So sorry to hear you are suffering. You are one the best people who ever walked the planet. We love you here. Everyone of us. 

I pray for a healing and may tomorrow bring no pain or nausea. Lidocaine patches are recommended for the blisters to stop the itching. Ginger ale and crackers may help settle your stomach and help with nausea. Ask hospice nurse and Keeper to bring you these. 


Horse Lover
Posted: Friday, December 22, 2017 9:45 PM
Joined: 11/4/2017
Posts: 124


alz+, are you able to get on a horse if you had the opportunity?
MissHer
Posted: Friday, December 22, 2017 10:19 PM
Joined: 11/13/2014
Posts: 2366


ALZ I'm a caregiver for my mom but I want to send my love and a hug,too. Praying that you feel better soon.    Deb
Iris L.
Posted: Saturday, December 23, 2017 1:15 AM
Joined: 12/15/2011
Posts: 18502


Alz+, I concur with the idea of a lidocaine patch.  It can be prescribed by a local doctor.  It should give you relief if the other medication you have been prescribed is not helping.  Does your hospice organization have its own doctor for the patients?


Iris L.


llee08032
Posted: Saturday, December 23, 2017 8:15 AM
Joined: 5/20/2014
Posts: 4408


Yes. Please don't suffer with pain when you do not have to. It sounds like your needing the ativan again and it can help you with sleep. Hospice should be helping with pain management and nausea med's and seeing that you are comfortable as a primary concern. Please check in when you can dear friend. Love, Llee
alz+
Posted: Saturday, December 23, 2017 8:48 AM
Joined: 9/12/2013
Posts: 3608


saturday morning -

I am doing better, still weak, not checking out this week then.

Michael, I would like to talk to you in new year. I live in Michigan and seems if you are lower income the State is grateful if you shorten your end of life expenses any way possible.

to everyone - I do feel the love and caring!

Horse Lover - I could actually go to a church member's horse farm and at least touch and smell them. I love the smell, the nickers and huffs. I have wanted to go for years !!! but no ride over. My back is shot and can not ride anymore. YOU do it and tell me about it - I can feel it when people tell stories!

slept 10 hours. no support for my trailer nirvana in desert so if I can move about by next week I hope to keep TV off and do some small photo projects and something else I forgot I wanted to do. Maybe it was decoupage an old tray?

Tip on shingles itch and pain: soak paper towel in white vinegar and hold compress on rash. It stings a little but stops itching better than the lidocaine which I have. Is said to have anti viral properties.

*****

Mistake: I waited too  long to make a change. 

If you feel like an adventure better sooner than later.  I was really surprised how easy it would be for someone with dementia to live in a trailer park.  Fenced in, gated, you can roam around on a golf cart, neighbors would hear you crash or smell fire. There is a water exercise class, a community building, all low rent style but also very forgiving. It seems such a happy place.

My friend who could not visit sent me a framed print of one of her paintings, it conveys the Buddhist practice of sitting like a mountain and dispassionately watching the thoughts roll across your mind like clouds below a blue sky. I burst into tears when I opened the box - exactly a non word instruction on handling disappointment, anger, resentment.

Is this purge of old emotional crap part of end of life?

****

I have to go rogue in some way to restore my sense of self. My plan is to attend the Santa photo op at ski hill bar at 4pm wearing a red swimsuit, a rhinestone crown and a beauty pageant banner that says "Miss Alzheimer's 2017". I think the drinkers will love it and hopefully it will be offensive to some too! something to embarrass my kids! jewelry and lipstick and big winter boots. wish me luck.

If I pull this off (it is a 2 block walk over to bar) I will post it.

No matter how many burdens fall on me I am going to be a rebel.

OBrien - there are about 5 trailers under $20,000 at the park...we could live there and help each other have fun. There must be 1000 of these low cost parks around. This is why rv living with ALZ can be very easy, economical and fun.

we have to invent ways to take a break and be ourselves. free range chicken style, off leash dog style.

ps: turning off political news helped shut down shingle spread. and I switched to am and pm cbd oil with THC which knocked me out and made me super imaginative...streaming ideas floating over pain.

merry christmas and a fun new year


Iris L.
Posted: Saturday, December 23, 2017 1:24 PM
Joined: 12/15/2011
Posts: 18502


It doesn't sound like Miss Alzheimer's 2017 is at end of life!  I'm glad the vinegar solution gives you relief.  Vinegar works wonders.  Yes, turn off the tv except to watch a Christmas movie.  On Christmas morning, a local station shows a burning Yule log.  I love to watch, since I don't have my own fireplace.  Keep recuperating and keep posting, Alz+.  You have a wonderful way with words and a great energy and spirit!  I'd love to see the photo of you with your crown.


Iris L.


llee08032
Posted: Sunday, December 24, 2017 8:06 AM
Joined: 5/20/2014
Posts: 4408


Maintaining your sense of humor through all this...love the photo op idea and picturing you in your Ms Alz get up! Captures the essence of you and your pioneer spirit.
obrien4j
Posted: Tuesday, December 26, 2017 2:14 PM
Joined: 11/18/2016
Posts: 451


God alz+, how I wish I could just drive by and pick you up and take you to that wonderful trailer park that you dream of and help make this next chapter of your life as peaceful, serene, pain-free and on those good days, as wild and crazy as you can handle!! I'd be there with you, alz+, raising all sorts of hell! BTW, what a visual- you with the crown and banner! You deserve peace and love alz+-I know you're not doing well alz+, so I don't want to assume you can go anywhere ,but just in case- what about the "ex's"? Is that a possisibilty or even with your daughter? May I ask though, why are you the one leaving your home and not Keeper? You may have mentioned it before, but I forgot. 

I pray for you alz+, my heart hurts for you. I wish I was closer...


alz+
Posted: Wednesday, December 27, 2017 7:13 AM
Joined: 9/12/2013
Posts: 3608


Image may contain: 1 person, smiling, standing and outdoor
alz+
Posted: Wednesday, December 27, 2017 7:17 AM
Joined: 9/12/2013
Posts: 3608


I was certain I posted that photo. Below zero.

Things are different. Spending time focused on clearing away unhealthy attachments was very helpful.

Love you all so much.  


jfkoc
Posted: Wednesday, December 27, 2017 9:37 AM
Joined: 12/4/2011
Posts: 21237


Don't get so busy that you miss a pageant!!!
Iris L.
Posted: Wednesday, December 27, 2017 12:45 PM
Joined: 12/15/2011
Posts: 18502


Alz+, you taught us to remember to SMILE!  That is so important.  Keep smiling, Alz+!

 

Iris L.
Agent 99
Posted: Wednesday, December 27, 2017 1:19 PM
Joined: 6/7/2013
Posts: 2166


As my sweetie would say,

Hubba hubba ding ding Alz+

You got EVERYTHING!

--

What a beautiful Santa snow bunny you are.  Thanks for sharing.  You have posted a moment of joy!