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advice needed about what happens when I am moved to new place
alz+
Posted: Friday, April 19, 2019 8:46 AM
Joined: 9/12/2013
Posts: 3422


Must be in good spirits today cause I am now worrying about once I have been moved out to new living situation and the fear I have building about making a change.  

anyone who has moved, or gone from living with someone to living without, anyone who made a change - how did it go? how long before you adjusted?

living alone for 8 months now with random support has been really hard, have 4 more weeks to go until my daughter arrives to drive me and dog out West to live at their father's house. I am feeling lost during most waking hours. I will have a bedroom and sort of imagined having a couple furniture things that mean "home" to me but it would be easier on everyone (else) to give it away or have garage sale here than pack and move much. Plus it turns out movers do not come to this area willingly.

my fear is being at new place will feel deeply like I am a guest who could be put out for displeasing my host. I talk to no one most days except the dog. I have poor hearing and have tv sound up, what will happen if/when he gets fed up? will I be searching for a different neighborhood, getting lost? am I responsible for his next stroke or next seizure? I called his last seizure "doing the electric polka" which just sprang forth, and like swearing during confession, is on my permanent record, mostly because I laughed so hard about it.

can not evaluate "worth" of anything, have not packed a thing. I am very attached to stuff that may not matter, I want to let go and can't figure it out.

Bill was perfect about his transition to assisted care living, others here really seem free because of the changes they made.

I am frightened so much and distracting myself by going for walk or sleep or TV is lonely and boring. 

Please advise.


Michael Ellenbogen
Posted: Friday, April 19, 2019 9:13 AM
Joined: 11/30/2011
Posts: 2246


 While I cannot speak about moving, I do know that any new change will be challenging and will take time to adjust. You have a good attitude and feel that will help you a lot in this transition. 


jfkoc
Posted: Friday, April 19, 2019 9:23 AM
Joined: 12/4/2011
Posts: 16818


It will be good/ it will be bad......both. We are going to be standing right next to you as always to enjoy the good things and work through the difficult.
Mimi S.
Posted: Friday, April 19, 2019 10:01 AM
Joined: 11/29/2011
Posts: 7036


Alz+, I did recently move to an 

ALF, which I don't believe would fit your life style, although they do allow dogs.

I could have gotten more by selling my stuff through private ads, yard sale, etc. I did not have the energy  nor the ability to do so. So I donated a lot to the local Salvation Army and had an auctioneer come and took the rest.  I was able to move furnishings for my living room and bedroom, but it was not cheap. 
And yes, going back to live with someone you divorced will not be easy. It will take patience and compromise on both your parts.  You will be living in a great climate area where you will be able to almost daily use the great outdoors as part of your living space.
I wonder if there would be a neutral party there that can help you both work out difficulties as they arise?
Know that all of us on these boards are rooting for you!

 

i was abke to move 

Iris L.
Posted: Friday, April 19, 2019 3:49 PM
Joined: 12/15/2011
Posts: 15927


Don't overthink it.  You were the one who taught us to look at new challenges with interest and wonder, not with fear.  If the TV is too loud, get some "Magic Ears." 

You might think about letting them be aware of your abilities.  You will need an assisted living situation in a private home.  This means that basic housekeeping chores and meal preparation are beyond your capabilities.  Arrangements will have to be made for chores.  Your "job" will be to enjoy the family and grandchildren.  Let them enjoy caring for YOU.

Iris. 


alz+
Posted: Saturday, April 20, 2019 2:06 AM
Joined: 9/12/2013
Posts: 3422


JFKOC - "My friends here will still be here to help" - I was imagining everything I knew was going to disappear, all current support - as slim as it is - and forgot this is transportable. Big relief.

Mimi - I will never have your elegance about things and changes but it helps to look up to people like you and Bill. He was a bad husband, has been a good friend. I have exchanged thoughts with him about me being there. He seems to really want to help me.

Michael - you attribute a good attitude to me, I hope it remains intact out of my element!

Iris - I woke up to let dog out and see full moon and read the comments here. I will keep in mind the "taking an interest" in my fear of being too much work or responsibility and being put on street. Now that I realize all of you are going to still be here to be reached out to I feel a release. I really was imagining being cut off from all I know, but my online support will remain.

****

I still have not photographed my heirloom stuff which us a very humble collection. I was going to make a photo book of the vases. A woman I became friends with one winter actually moved to nearby town last year and then moved back to Dallas. I wrote her about how she moved and she said she didn't have furniture to move and shipped most stuff UPS ground in large boxes and total was only $300.

Basically I am afraid of being put away, being homeless. I started imagining ruining my bed, wandering, burning myself cooking, being yelled at. The fear was so strong yesterday I went outside with an ice splitting tool, shovel and ax and pounded the ice and snow left on front and back house decks. I stressed my back and hurt both hands, I would come back inside and rest then anxiety would build etc etc and I moved most of it off deck. Today is going to be high 60's and rest will melt off. Still 10 foot mounds in front of garage - my back will not let me do more shoveling / hacking.

My dog would not let me walk mile loop earlier in day - there were bear and cub tracks a few days ago which I photographed and she did not like the smells. They might have been around, she sat in road and I pulled on her leash, she said "Nope."

The dog is becoming more helpful.  She knows I am not lead sled dog, the dog may hold the move together.

love and courage



jfkoc
Posted: Saturday, April 20, 2019 9:51 AM
Joined: 12/4/2011
Posts: 16818


Your home is where you rest your head and I know that wherever that may be you will have friends, people who care about you.
Iris L.
Posted: Saturday, April 20, 2019 1:10 PM
Joined: 12/15/2011
Posts: 15927


Alz+, you need a stress-relief method that you can call upon at a moment's notice.  A lot of anxiety-provoking situations will come up.  Personally, I use deep breathing as my stress-relief technique.  It's simple and it works!  Look up abdominal breathing.  It's very easy.  I want you to be relaxed and calm in this pre-move period.


Iris


alz+
Posted: Thursday, April 25, 2019 9:36 AM
Joined: 9/12/2013
Posts: 3422


Anxiety is turning into tidal wave size thing.

Been trying to walk but feeling very lethargic and shaky, do deep breathing, wake up from sleep in panic.

Yesterday the neighbor friend who helped me through winter saw me on road and asked me to come inside to talk to her. Turns out she has been reporting back to my daughter and son (they are all friends now) trying to explain to them I am very much helpless despite being able to text and email. She said she didn't think they understood.

She listened to all my anxiety and about my daughter in law "rejecting me" she said, "Probably she is uncomfortable with uncertainty around her kids."  Maybe so, that seems understandable. It does not explain her taunting and/or avoiding me when I saw her last spring but anything to lift my fear burden.

At the same time I felt a great relief in being able to spill my guts, she kept repeating in different ways how she "wants my house, would buy it" and how she "is only person who has kept me going for 10+ years" (true in some ways). I told her she will have to speak to my son about the house and thanked her several times for all she has done.

She also told me how she and other neighbors would keep the yard mowed and how there was talk for years about Keeper wasn't making lawn look like suburbia as the new residents and how they thought I "could do better"  !!!! I broke down at that point and blabbed about how "yeah, good they all discussed how he was a jerk and failure my husband was while they mowed down $200 in new bushes we had planted while we were gone and complained my dog ate some bread  put on someone's deck for birds and hope everyone is glad I'm gone" shaking and holding back tears I got out of her house and walked home. She came over then and apologized. I can't stand people, even helpful ones it seems.

I filled out Micheal E's linked questionnaire  and it had questions about being used or marginalized and a space to describe incidents. Flooded with memories of being foolish, my family betrayal, etc. Question on being abandoned by friends - anyway, it kind of put 7 years post diagnosis into view and it was tragic.

One question; Do you laugh or have fun? OFTEN I checked!

****

so living in this mess, weak, disinterested in food, anxious, nightmares. I have written emails to New CGVR in California about things I need help with and what makes me crazy, he has responded with promise to help me with meds (would give me mine same time he takes his),  can bring home food, will help me with dog needing to go in and out (dog door but my dog is super sensitive about using her body in doorways so?) and that he will not be hostile if I have radio or tv on again.

The road trip out west - Keeper reminded me we always had to stop for 2 days after 2 days on road for me to recover. Also how many trips I ended up in an ER. He said I should be firm about wanting to stop someplace for a couple nights I missed visiting because this is last road trip of my life but my daughter has 2 weeks off work to do all this and plans to shoot straight out there.

Lastly, Hospice never sent me the paper work I asked for so I called again and they said no one left any message about that request. I thought someone was listening in so I said, "The nurse made remarks two visits in a row that "she didn't ask to see me, I asked her". I said that was why I quit and I wanted to see the paper she had me sign while she covered up reasons for stopping service. " They will never send me anything I probably will not complain officially.

My hands are bruised from trying to work off anxiety by chopping ice off decks. I can't wash dishes, just lie in bed most of time. Today is 60 degrees and I will try to dress and walk dog alittle. 

editing this mess has helped me breathe. I don't want to take ativan because I wet pants for days after. I think I will have a breakdown on the road trip and I am scared. I also think I will collapse once I get to my new bedroom.  

how to lower my expectations or rethink situation? My kids say "You are going to be SO happy you moved back to California". 

should I avoid neighbor now? she is painting inside of house once I leave and still helping me every few days with one thing or another.

help me make it out of here


Iris L.
Posted: Thursday, April 25, 2019 5:36 PM
Joined: 12/15/2011
Posts: 15927


BREATHE...BREATHE...BREATHE...


The weather will be different; the flowers are BLOOMING!  I never noticed that the tree outside my window has tiny flowers-they are so pretty!  There are some pink blooms here that look like cherry blossoms but they are not as pretty as cherry blossoms--still pretty.


I have invented a new term for my life.  I must "bubbleize" my life.  Meaning, put myself into a bubble.  I'm a woman in a bubble!  I keep all outside agitation away from myself.  As much as I can.


What questionnaire did Michael have for you to fill out?  I must have missed it.


Getting dressed and keeping to some semblance of a routine is rehabilitative for us.  I finally went through my sock drawer.  Why do we keep single socks and socks with holes?  Or is that just me?  No, I didn't grow up during the Depression.



Keep keeping on, Alz+, one step at at time.  Breathe, and hold on!


 Addendum: I see the survey and I have completed it.


Iris L.


alz+
Posted: Friday, April 26, 2019 3:26 AM
Joined: 9/12/2013
Posts: 3422


Iris - I long to be in a bubble world, speak to no one except those with dementia! 

I talk to dogs and trees and birds with no ill effects.

Hmn. I have been avoiding eye contact since  last January. On my dog walk on dirt road mile there is a stretch where snowmobilers share the road coming off a trail. Every winter I would  smile wave and cheer them where their trial converged with road for a bit cause they stay at the Lodge locals try to make them happy so they keep visiting. 

This year I turned away and huddled with my dog when they went past. I used to wave to truck and plow people on the road and now I turn away or look down at road.

Maybe it is time to avoid people? 

*****

the questionnaire - it affected me deeply, to give short concise examples of feeling marginalized, abused, neglected. Really happy someone is asking about these things cause it means they KNOW it happens.

I am doing better tonight, exchanging info with New Keeper at new zoo I am going to live with.  He is open to learning and he recognizes now how exhausted and in need of help I am.

a little hope


jfkoc
Posted: Friday, April 26, 2019 10:07 AM
Joined: 12/4/2011
Posts: 16818


Would he like a list of good educational materials?
llee08032
Posted: Monday, April 29, 2019 7:45 AM
Joined: 5/20/2014
Posts: 4404


Alz+,

 

Iris is right, breathe, breathe, breathe! Visualize walking in the sun and being happy. Freedom. Being able to sit outside. Trailer hitch your daughter can attach to her car are cheap to rent. Storage space to rent if you take too much stuff. Your ex sounds open minded. That is good. You share children and you are friends. There will be no throwing you out in the street. Things have a way of working out and we adapt. Not everything needs to be decided now. Pretend your going on vacation. A long vacation...yes.  An adventure of sorts. Hold on to the thoughts about what you dreamed you will most enjoy when you get there. Chase away those panic attacks with good thoughts. Feel warmth. Feel love. Let go. Let God! He's got this. We're here. I'm here. Just an email away. Love, l
alz+
Posted: Tuesday, April 30, 2019 12:08 PM
Joined: 9/12/2013
Posts: 3422


being reminded I am not leaving alz.org friends is the biggest help so far to the anxiety.

I was thinking "leaving my life". still scared and wake up fearful, try to distract myself, walked dog but am often pelted with mad memories the whole time. 

Yesterday I made myself food for a few days, have a couple hours eveery few days to do essentials. Upset my son over phone (of course - with the phone again, why don't people believe me when I say phones are not good with me?) 

I would send  Keeper No 2 my 25 books on alz but have not found one yet that conveys what I need, my ptsd based survival requirements. I need time to myself, a dog to feel safe, appreciate food brought to me without asking 20 questions, will need help washing myself.

a friend who moved away had a very bad week and contected me for support - she has cognitive impairment but can still drive, things were spiraling, she did something that maybe someone else would have called 911 about, as it turned out she sirvived and ended up laying in her back yard with her dying dog for the night. 

my ability to know what is right is way off. i trust fewer people all the time. forget to take the oil. still crying a lot, might just be ALZ crying thing.

about 10 more days until daughter arrives. 

if i fel cogent again i want to write - or someone else please start - about living alone, leaving someone who will be a failed caregiver, that stuff. really hard and dangerous

love you



jfkoc
Posted: Tuesday, April 30, 2019 12:38 PM
Joined: 12/4/2011
Posts: 16818


It is going to be hard. It is also going to be good. You are making the move because the goods outweigh the bad.

One idea. Show your daughter how to get to this site. We can help her as well as you as you make this move.


Iris L.
Posted: Tuesday, April 30, 2019 9:34 PM
Joined: 12/15/2011
Posts: 15927


You can aim to wash yourself, Alz+.  Take your time.  Take whatever time you need.  Break it down into steps.  I find I can do what I want if I go slowly and break it down.

Iris


alz+
Posted: Thursday, May 2, 2019 8:26 AM
Joined: 9/12/2013
Posts: 3422


Had the shakes, felt anxious, called it anxiety. feels like flooded with panic.

Thought maybe the liquid B12 complex couldn't hurt. Took double dose. 2 hours later was watching tv and noticed I was not trembling anymore.

?????

woke up feeling ok, had slept 9 hours (Keeper stayed over night after taking dog to vet and bringing groceries so I could be off duty).

*****

I will take the B12 supplement because it seems to also help my digestive tract and as far as I know it isn't toxic. I was prepared to cry for 2 years. It scares me that some remedies are cheap and easy to get but how would anyone know to try them?

*****

have been choking for 2 years when I brush teeth and now sometimes when eating. Used a tiny spoon one day cause everything else dirty. tiny bites helped. will use tiny fork and tiny spoon to eat now.

8 days until daughter comes!  I will need to change insurance supplement to my medicare. everyone whatever age with cognitive disorders ought to have Medicare.


Iris L.
Posted: Thursday, May 2, 2019 8:19 PM
Joined: 12/15/2011
Posts: 15927


Alz+, most older adults have a hard time absorbing vitamin B-12, so using a supplement is a reasonable step.  


I don't know why you're choking.  Are you chewing thoroughly?  If this persists, you might want to have a swallowing survey performed in your new location.

 

8 days!  Rest up!

 

Iris


a_step@a_time
Posted: Friday, May 3, 2019 2:10 AM
Joined: 11/21/2015
Posts: 207


Alz+

Smaller utensils is a good observation!

I had some gag throat too when I had tight throat. Omeprazole, gauifenesen, cepocal with cough suppressant helped, but it is to treat the silent reflux I am having.

Oddly, Sometimes coffee helped relax the throat too.

Keep hanging in there. Take it little by little.


Jo C.
Posted: Friday, May 3, 2019 8:55 AM
Joined: 12/9/2011
Posts: 9699


Hello dear alz+.   For certain you will not lose your friends here; we are always going to be here with you, no worries there

Alz+, any of us would be feeling big-time anxiety regarding such a huge move; that is quite normal for what is happening.  A major move is rated high on the stress level scales, so upset, anxiousness, second guessing, some grief and more; all of that is normal.

Sometimes swallowing issues that suddenly crop up during times of extreme stress is an emotional reaction to all that is happening; there is even a medical name for it.  Once the stress is reduced when settled, if that was the cause, the symptoms seem to go away on their own.  However: if it continues after settling in from the move, then have it checked out. 

It would probably be a good idea to be honest with your daughter when she arrives. She cannot read your mind, so best to tell her you have been very much fearful and are suffering considerable anxiety due to the move as much as you wish to have everything settled, and ask for her understanding.  Just having her there to handle some of the headache bits and pieces will be helpful. 

Sometimes, we human beings, when facing monumental changes in our lives that are filled with unknowns, we will ruminate over and over and even create imagined possible problems in our heads that will never happen.  I am one who tends to do this when a huge problem issue is at hand.   What we imagine ramps up our anxiety, and most often, the imagined fear never happens and things are much better and smoother than we had thought.   There is also that bit of grief with such changes as we process all we leave, that too is a normal part of the process.

Your trip can be uneventful.  You travel well with your daughter.   If you have or can buy some earphones to wear in the car, you can block sound and can also listen to soft music, and just rest.  Take along a favorite blanket or afghan; take some really good tasty treats and snacks that you like and ample "lady supplies" as well as your meds.  The road trip is NOT forever; it will pass quickly and you will be fine.  Use the road stops for bladder comfort so a full bladder does not make you feel "antsy," and for some leg stretching and have a good leash for your four footed friend so he too can get out and stretch.  Having his familiar food and water bowls will help him travel well too.

It is a adventure of new sights and sounds and even the air will smell different.  Sometimes having a map and following it, is fun to watch the miles and towns come and go.

When you arrive at your destination, you have a dear friend of long-standing waiting to welcome you.  Is it possible to find another title for him other than, "Keeper Two?"  He is not the same as the original Mr. Keeper and since he sounds quite different from Mr. K., perhaps he deserves his own title.  It might be kind of fun thinking up a new one. 

Your dear daughter will be there with you soon this next week; she will be focused on the return trip which is as it should be, but she also wants this to be successful for you too.

Someone mentioned having her come to the alzconnected Message Board; perhaps to the Caregiver's Forum to learn more.  If that is good for you, fine.  But, if you feel it would compromise your own confidentiality and free flow of communicating, I can understand if you do not wish that to be offered. It is all up to you.

I am thinking of you, and am so hopeful that you continue to let us know how you are and how things are going; especially once you arrive at your new place of, "no more snow and no more ice."  We will be anxiously waiting to hear from our friend. 

Warmest, warmest of thoughts and a soft hug are being sent your way,

J.


alz+
Posted: Friday, May 3, 2019 9:27 AM
Joined: 9/12/2013
Posts: 3422


Jo C - we wrote at same time!

Now I forgot what I was going to say. Anyway, what you wrote all makes sense. 

I don't know why I can't find nickname for father of my kids. We have been emailing short messages and sounds like they have a bed in my room now. I will arrive on my 70th birthday more or less.

IRIS - the choking thing has been going on for 2 years. I think it is malfunction with tongue, it may also be related to permanent tongue movement problems from bad prescription antipsychotic drug given me before alz diagnosis. I have to wear a mouth guard all day and night to keep tongue from being scraped to shreds on teeth. 

Muscle confusion between spitting out (toothpaste) and swallowing. The coughing goes on for a couple minutes sometimes. When I get settled and stuff, insurance changed, I will see doctor out west if I can't rig a system to stop it by then. 

Using tiny bites of food, focusing on the act of eating now - took me years to figure out I might be swallowing food mot properly prepared with mouth enzymes - maybe also caused "acid reflux"?

so my health management supplies are B12, cbd, probiotics.

*****

My daughter and I are planning on having a really nice flexible trip. She is intuitive about things and I have been sharing tips on how to manage Mom. 

love and courage




Jo C.
Posted: Saturday, May 4, 2019 2:46 PM
Joined: 12/9/2011
Posts: 9699


The information that meds from years past may possibly have affected the tongue and swallowing, brings to mind that there are two new drugs on the market that purportedly assist with such affects which all fall under the label of, "tardive dyskinesia."  A swallow eval may be of great help to finding out what the actual issue is.

I have absolutely no knowledge about the new meds or how well they have done with lessening such problems; but after you are settled into your new home, it may be something to ask your healthcare provider about if you wish to follow that up and get an order for a swallow eval which is easy and nothing touches the body.  It is simple and absolutely painless and is done with swallowing various small amounts of food and fluid and a fluoroscope simply follows the swallow in real time.  The exam is done with a speech therapist conducting it.

In the meantime, it sounds as though you have found a way to minimize the effect of the issue, so that is good.

Your daughter sounds wonderfully capable and being that she is very intuitive is a big plus and a huge positive on multiple fronts.

I found myself wondering if your bedroom got painted the color you wanted; your new bed is in place and it sounds as though the welome mat is outside the door waiting for you.

 Please do let us know how things are going, especially when your dear daughter arrives; your friends here are all in your corner and sending out positive thoughts into the universe on your behalf.

J.