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adjusting to new living environment
alz+
Posted: Monday, June 10, 2019 11:11 AM
Joined: 9/12/2013
Posts: 3560


even if I am with someone I have known for 50 years in a house I have visited often it is  not my home and figure might be months before it is, which is ok.

My deafness has ended most conversations, but following a conversation drains the life out of me. Habib, my housemate, mumbles from a stroke so I can't lip read. 

Having my bedroom separate is saving us all, I want to be alone because (I think) having to communicate saps my strength.

I made a cold veggie soup for the 100 degree weather, walked 4 blocks to store, got items, checked out, walked home. Was very scared in grocery but traffic was light for some reason and now I have food made for 3 days.

Proud of that. My bed is great - have not slept thru a night in years and now every night my dog is fine letting herself in and out so I have been dreaming again. All similar stories of escaping, hiding, eluding, and traveling - not tense dreams, colorful and pleasant.

Have found myself not responding  to many things because it is just too much work, that seems to be the equivalent of STRESS, or a form of stress, and stress drains me to point I can barely walk. I have stopped trying to explain to Habib what helps and what doesn't because he is certain he knows and persists in doing it his way no matter the results.

Now the appeal of assisted living makes sense. I still need to get my own food and do my own meds, have a routine like before.

Today is going to be 100 degrees with a fire watch and I am home alone for the day as Habib has doctor appointments and stuff until late afternoon.

Being alone is a relief and at same time I am on high alert, being extra cautious, etc

I don't think I will make new friends here, it is a pretty good situation though. The neighbors keep a distance, some people cringe, that distancing thing when they know I have ALZ.

People have an unshakable belief about what ALZ is and means. A woman walking her dog stopped me in road and my speech was so slow she backed up. I said "It's ok, I have ALZ." she said "Really? I don't think you would know that or be able to walk your dog if you did."

Habib upset I get recycling wrong (I don't even try to figure it out) I told him to put signs on bins "paper" "cans" etc he was exasperated and said he'd just do it himself. I thought, great!

My life I had on my own is disappearing from memory already. I think I should have my hair cut off, it is all dry and flat, these little bits of wanting to look "pretty" or normal at least are kind of nice.

the answer to every decision is more or less "What is easiest? what is safer?"

your support and advice has been really life saving!

love and courage



Iris L.
Posted: Monday, June 10, 2019 5:37 PM
Joined: 12/15/2011
Posts: 16579


Alz+, you're settling in and developing your own routines.  Great!  


Congratulations on your marketing excursion to get the ingredients for your soup! 


Iris


alz+
Posted: Tuesday, June 11, 2019 12:02 PM
Joined: 9/12/2013
Posts: 3560


Iris - thanks. Our accomplishments are big deals.

I gave my "new address" to a friend for her to send me something for house. Turns out it was my street number from 40 years ago in Florida. Had to go to mailbox with my phone and take photo so I could send her correct address. I would never have known if she hadn't investigated why there was no delivery/no such address if she hadn't sent me my own email with wrong street number.

The "soup" is an easy favorite fake gazpacho. A big bottle V8 HOT, diced celery, cucumber, onion, zucchini, 1 cup favorite salsa, cilantro (if you hate it skip it), small can diced hot chilli peppers, 1 can corn,  green or red pepper diced. It sits cold. I add sea salt and black pepper to taste later. Some lemon juice.

Once I have ingredients it is just chopping and putting it all in a bowl. It is also a cleanse for the 100 degree days.

*****

Conversing with people drains my gas tank! am also told I walk around saying "I don't know what's happening" 

I hit some key and typing went screwy. oy vey.


Canada111
Posted: Saturday, June 15, 2019 12:25 AM
Joined: 8/22/2016
Posts: 263


Alz+ 

You personify your signature - Love and Courage. When we met online back in 2017 I wrote those words on a post it and put it on my mirror. 

Your adjustment to living with Habib and finding your way to create a life for yourself in CA is nothing short of miraculous. I look forward to more stories of easy successes and the ways you continue to make this work. Love the way you have conquered the fear. 

Canada 


Iris L.
Posted: Saturday, June 15, 2019 12:31 AM
Joined: 12/15/2011
Posts: 16579


Alz+ brought a new perspective on addressing fear.


Iris


alz+
Posted: Saturday, June 15, 2019 2:45 PM
Joined: 9/12/2013
Posts: 3560


IRIS AND CANADA -

I have found an awful lot of help on youtube from lectures about handling trauma and fear/anxiety. I just blunder through it and wrestle anxiety.

find myself reacting to mumbled insults and comments so today I took a walk with my dog and had a good cry. When I got back to house Habib was gone, he had snapped at me again over my struggle to return curtains I bought online, had to find box and find tape and get help online, the hour it took me to find out HOW to do this at least expense without me driving drained me. 

Figuring out curtains is a pointless thing to him. I am in charge of keeping heat out during day when he is gone, he has old sheets tacked outside and some blinds. The heat kills me, he says over and over how great the heat is. when 100 degrees sheets aren't much help and hard for me to lower shades or get sheets back up every day. In a year I won't be able to help myself with heat. It all scares me.

Now I see why going to live in a assisted living is really good for some people, no one to rag on you over anything.

anyone else handling a caregiver have tips for me? Is there standard advice on how to manage caregivers who believe they know all there is to know about my condition with dementia? People finish my sentences with totally wrong words because I speak too slowly looking for words. There is a certain aversion in body language towards me (dementia). I like laughing with me, not at me so much.

 The neighbor women stop by when walking their dogs and he is SO pleasant and kind to them.  

****

yesterday I walked to grocery, took 45 minutes wandering thru store to figure out ingredients to make vegetarian lasagna while trying to appear  normal as possible. I hauled it all home in sacks I brought.  I made big pan of it spinach zucchini onion garlic cheese and sauce. Nervous while baking, wanted it done before Habib got back. 

after being extra vigilant about stove, temperatures, pans, knives - it turned out I left a front burner on HIGH - which he found as soon as he got back. I would have sworn I turned off the burners after putting the mix all together and into oven. I had pan cooling on stove and did not notice burner on. He said, "You could start a fire."

Things happen everyday that I do not KNOW I did, mistakes.  When he points out my errors I am fearful and shut down.  Maybe that means time to quit trying to do stuff?

He is not interested in books or advice, he knows it all. About everything.

maybe I am missing something, maybe I am provoking him. Think my friends here might be able to see something I am missing? hope so.

love and courage



Iris L.
Posted: Saturday, June 15, 2019 4:08 PM
Joined: 12/15/2011
Posts: 16579


Regarding the stove: when I first joined 10 years ago, my first interaction with the caregiver members was them advising me to stop using the stove!  This was because I had mentioned that I would forget, leave the burner on, and burn food-- even setting the smoke detector alarm off.  Not good!  I stopped using the stove for a long time.  Now, I can cautiously use the stove, but I never leave the kitchen with the burner on.  It is just too much of a risk.  I use the stove about once a month or less.  I use the microwave if I need to heat something.  


I have figured out that "assisted living" means that the resident does not need to COOK or to DO HOUSEKEEPING or LAUNDRY.  These chores can be taken over by family members or paid caregivers while one is still living at home, thus avoiding or delaying a move.  Or, in my case, I can make other arrangements by using paid services--food delivery, a Roomba,  and laundry service.  


Alz+, my advice for you now is to use the stove only with supervision, if at all.  Think about foods that don't need cooking, such as salads and sandwiches.  Be careful with KNIVES!   Make your life EASIER!  


I don't have anything to say about the curtains because I don't quite understand what you are talking about.  There are some church groups that will come in and try to help seniors in their homes.  I was given a social worker, not from a church group, but from a senior group health plan, who helped me.  Her sevice did not cost me anything; I suppose my insurance covered it.  I really don't remember that part.  


I was able to handle my own housekeeping at that time.  Now, I am having more difficulty with all household activities.  I will be making accommodations.  I was thinking just last night, that I need to LET GO of thinking how I used to function.  My situation has changed but my thinking has not changed.


I don't follow Youtube too much for my situation.  I have found that just about most of what I need to know I can learn right here on the pages of Alzconnected, from the other members, both patients and caregivers.  I follow the Flylady for household management.  Decluttering and living a simplified lifestyle is a major as aspect of making my life easier.  My aim is to be COMFORTABLE! 


I live in a safe and quiet condominium complex with many nearby conveniences.  I don't intend to move for a long time, if things remain the same here.  My suggestion for you, Alz+,  is to have systems set up so that you do not have to cook or do housework or laundry.  If your family know their expectations, it will probably be better for everyone.  They can grocery shop once a week, prepare meals and leave them in the freezer, they can clean once a week and do laundry once a week.  ( Perhaps twice a week.)  What do you think? 


If there is a Senior Center near you, you might want to go there for lunch once in a while.  It costs about three dollars where I live.  Also, you might want to sign up for "Access" which is the county transportation service for disabled people.  Rides cost about two dollars, and you can bring a companion.  

Iris


jfkoc
Posted: Saturday, June 15, 2019 4:10 PM
Joined: 12/4/2011
Posts: 18875


You could start a fire. Now that is a fact that needs to be recognized. Can you imagine how frightening it would be to come home and find a burner in your house left on? Would Habib share with you anything else he is worried about?

It may be time to let go of things that are very difficult and read a good book or a movie on TV.a

Re the heat. My bedroom windows face west and nothing I tried helped with the heat. I did curtains, insulated silver blanket things used to camping, shades. I finally bought a window air conditioner to boost the house one. I also use an oscillating standing fan. Fans are wonderful.

What would be hard for me is to realize that I was sort of a guest in someone's home. Yes, he wanted you to come but there was no way to understand the adjustment that he would need to make and for certain he has no knowledge of AD and he may not care to put the amount of effort into care that you want now and will increasingly need. You may need to work yourself into "permanancy".

How to handle a caregiver? Probably the much the same applies as "handleing" a person with dementia. You let a lot go. You listen carefully. You do not argue. You do a lot of smiling and nodding while trying to understand the other person's view. Actually not different than living with anyone. It "ain't" perfect. 

If you are asking if you are provoking Habib the chances are that you might be. You may get farther with getting agreement rather than talking about AD. For instance...Habib, what would you think about getting some curtains? Would that be alright with you? He says no then you state the problem...you are hot so if not curtains what would you suggest. 

Assisted living certainly has benefits but would you be willing to lose a lot of your independence. My husband would always say that everything in life is a trade off.

Take a deep breath and be the best roommate you can be. That's all you can do with the addition to please pay attention to tasks that you would best let go.

BTW....do not cook and turn the oven of when it is 100 degrees outside. Make gaspacheo and a sandwich.

Hope something I said will help.


Iris L.
Posted: Saturday, June 15, 2019 4:26 PM
Joined: 12/15/2011
Posts: 16579


Regarding meals: right now, I eat more vegetarian meals. But before, I would buy a rotisserie chicken or baked chicken pieces from the supermarket.  With a starch and two vegetables, that was my dinner.  I had sandwiches for lunch, and cereal and fruit for breakfast.  


Signing up for Meals on Wheels is also an option.


Iris


Iris L.
Posted: Saturday, June 15, 2019 6:42 PM
Joined: 12/15/2011
Posts: 16579


California is a wonderful state!  I've live here for over forty years, and I just saw my first monarch butterfly.  It was so beautiful! 


I just returned from the supermarket.  There is so much already cooked food to buy.  If you buy fresh fish, they will cook it for you.  So much wonderful raw, fresh produce!  Yum! 


It may take a while to get your bearings, but once you and Habib get your routines down, your lives will be much more comfortable.


Iris

alz+
Posted: Sunday, June 16, 2019 6:44 PM
Joined: 9/12/2013
Posts: 3560


good advice and I can understand what you are saying.

he took me to a town to get my cbd oils and we then went to a field where the dog got to roam a little. Everything seemed as good as it ever does.

then he blew up. He told me I am selfish and want everything my way. He told me I was dense and so on, that I "don't listen and am always rude". He told me to leave.

I said I would go. He said "I'll drive you to the airport."

****

he had a vision of how this would be, he is very upset that I have rules I abide by to keep me calm, to manage meds, the dog, sleep. Apparently, after telling me to do whatever I want to the house, even when I ask what he would like he just gets irritated.

 I suppose being direct comes across as rude. I thought he was asking me "what works, what doesn't" and I was telling him. Now it is wanting everything my way. Do I have days when I don't have Alzheimer's? I don't think so. Every day I do a routine, still  every day I manage to give him space, to be quiet, to help his dog, to clean where I can.

I am frozen in bed with fear about where to go. I went through so much to get here, this is the most cruel thing - it seems right now. I am fortunately in shock.

when the shock wears off I am fearful of what he will do next. If I have to, I will go home and try to find a place ??? there is no place for me.

The looks of contempt was just shattering. Will let you know what happens.



Iris L.
Posted: Sunday, June 16, 2019 6:59 PM
Joined: 12/15/2011
Posts: 16579


From my readings on these boards, they ALL get irritated--even hostile.  Living with another person requires compromise on both parts.  Does your daughter know how things are?

Iris


jfkoc
Posted: Sunday, June 16, 2019 7:08 PM
Joined: 12/4/2011
Posts: 18875


I am so sorry this is not working out well for you. Your personalities just may not work together. 

Please consider talking with your daughter. You also might consider seeing a professional together.

Keep posting and we will keep throwing out anything we can think of that may help.

You know how much we care about you!


dayn2nite2
Posted: Sunday, June 16, 2019 7:25 PM
Joined: 6/20/2016
Posts: 2403


I thought your children were supposed to assist with this situation?

I will say that from your description of the day-to-day, you do describe wanting everyone and everything to conform to what you want.  Environment must be just so, people must be this way, temperature must be this.  I’m going strictly by what you are posting.  When things are not as you wish, you have a catastrophic reaction and hide in bed.

Living alone is not possible so if this doesn’t work your only option is assisted living in California without dog.  Likely restrictive and you will have to live by their rules.  Eat what they serve.  No wandering around.

Choice is yours, but you are not in a position to dictate your terms.  


alz+
Posted: Monday, June 17, 2019 2:03 AM
Joined: 9/12/2013
Posts: 3560


I guess when he said "Make this your house" "do what you want" I should not have believed him. I thought I was making it safer for both of us, easier.

Day2night - I have been living alone for many months, I had to set up things in ways I would recall to help me survive. I thought I could replicate that here. I can see I was wrong.  The move was frightening, I needed to fix certain things because I am short, because my vision is distorted, because hanging a curtain to keep out heat seemed better than tottering on egg crate boxes to thumbtack a bed sheet over windows every day. I thought it made sense to clear the outside steps since he was also tripping on stuff. Yes wanting things "just so" to not get hurt was pushy and demanding. I should not be deaf, either, that was rude too.

******

I have nowhere to go. I can't afford assisted living. I can't afford to rent of a place around here, and don't drive.

 I spent my savings on having this house remodeled (and was asked how I wanted something done, thought I was supposed to answer the questions) and paid for a new septic tank here so he has his house remodeled and cleaned. Is that enough to make up for the inconvenience of me being here 2 weeks?

My kids have jobs hundreds of miles south of here, no they won't take me in. My friends are dead. I am out of courage. 

I did text my daughter and she thought he would calm down. I think he texted her "sorry, can't do this".

It has been only 2 weeks. He is gone most of the day and I was in my room most of time he is home. 

Some of you will end up with no place to go, too. It will be your fault. Or you will be living with someone who "does not get it" and find asking for what you need to cope will be just way too demanding. You will beg for kindness and it won't come.

May there be some peace for everyone. I do love my friends here so much. 

Going for walk under the stars with my dog.


llee08032
Posted: Monday, June 17, 2019 7:47 AM
Joined: 5/20/2014
Posts: 4405


I'm so sorry all this happening! He cannot just throw you out in the streets. w/o you having a sound and realistic plan in place. Take back all he told you about making this your home too and then throwing the baby out with the bathwater. He's not fighting fair and a boundary needs to be set where he does not threaten you with "you have to leave."Tell him you'll go when he pays you the money for remodeling. Or better yet don't tell him anything that could make things worse. There is nothing wrong with retreating to your room when things get too intense. Everyone has different standards for living. That is not a fault on your part that you try to make things better and easier. Insulated curtains are needed to keep out heat and cold tacking up sheets on a window is not reasonable. Who wants to live like that? Your just trying to normalize the environment. You have done nothing bizarre or over the top to warrant this reaction! From what I can see he wouldn't have agreed to this arrangement if there was not something in it for him? Now after only two weeks he wants to not keep up his end of the bargain. Maybe the kids need to step in and set him straight? If he wants you to go fine. But you need to be able to sell your house and make other plans. It may even be illegal for him to just throw you out. You should not be treated like some stranger off the streets! 
alz+
Posted: Monday, June 17, 2019 9:00 AM
Joined: 9/12/2013
Posts: 3560


L lee - if your message had not been here this morning I don't know what I would have done.

I woke up to this:

He made a plan with someone, maybe my daughter, to send me to a psychiatrist because I "am unhappy all the time". ! They called an ALZ specialist who agreed and IF I go and IF I take what they give me "to make me happy" I am allowed to stay.

If there was any place I could escape to I would run right now. He claims he never did anything to provoke or insult me, that I made it all up, and he doesn't remember yelling at me yesterday and I am supposed to go to get medicated.

On fragile ground here. The shock is just wearing off and I am going into depression. Taking B12 and staying in room until he leaves for day. They will put me in a psyche ward and they will "have done all they could."

My reality is zero with him. Like I said, if I had someplace to go I would. 

Thank God you are my friend. I swear, you and Iris and others have kept me from desperate measures and given me time to heal some things and find my footing. 

I have no rights because I have dementia. Alzheimer's brings out the cruelty in some people.


dayn2nite2
Posted: Monday, June 17, 2019 11:28 AM
Joined: 6/20/2016
Posts: 2403


At this point you should have your daughter look into applying to Medi-Cal and finding a board and care or facility to move to that accepts that form of payment.  Then you will not have to live there.  

I think it’s within a caregiver’s rights to require a consultation with a psychiatrist under these circumstances.  B12 is not treatment for behavioral issues and this situation cannot continue.

Nobody is “owed” a caregiver, including me.  


alz+
Posted: Monday, June 17, 2019 1:24 PM
Joined: 9/12/2013
Posts: 3560


stop it.
Iris L.
Posted: Monday, June 17, 2019 1:27 PM
Joined: 12/15/2011
Posts: 16579


I have been racking my brain trying to come up with a solution.  


The PWD/caregiver relationship always seems to require some getting used to, on both sides.  Living with a PWD is not like living with a person with other types of disabilities.  In your cases, neither of you have had enough time to work things out between yourselves.  He says you are selfish; you say he is not listening to you nor making you comfortable.  You both are probably right.  


Since you are both disabled and subsequently impaired, a third party should be available to mediate.  This would seem to be your daughter, but since she is not there, some other person will have to do.  Some person with experience with PWDs and family dynamics and caregiving.  I would suggest a Care Consultant.  However they do not make house calls.  Is there a social worker who could come to the house? 


Alz+, you need to have an advocate for yourself.  If you do go to a doctor, who will speak for you?   I think you need to try to get your daughter's input.  There are low income senior apts, but they do not allow pets.  What's going on with your house in Michigan? Is it on the market? Do you have money for another place? 

 

You might be able to still make it work if you limit contact with him and let your daughter or another person intervene.

Iris


Michael Ellenbogen
Posted: Monday, June 17, 2019 1:40 PM
Joined: 11/30/2011
Posts: 3431


 Could the Alzheimers Association possibly help with that if they have an office near you? I am more then happy to check into this if you would like. I would just need to know were you are located. Just send that information to me privately. I like Iris Idea to let someone else be a mediator. 


jfkoc
Posted: Monday, June 17, 2019 2:05 PM
Joined: 12/4/2011
Posts: 18875


First of all I would not assume that "you" are the problem. You have moved in with someone who has no earthly idea what AD is about. He wants you to change. Mostly that is  not going to happen.

You do need a Dr. Everyone needs a Dr. and seeing an ALZ specialist might not be a bad thing if they are good. You are having a lot of anxiety and perhaps a small dose  of something like Seroquel would make you feel better. Habib could  look into taking something too.

Allowed to stay? Well, I can not begin to discuss that for I would never end.

For now you are where you are and overall it is undoubtedly better than where you were for many reasons weather being one of them. I fear that this one of those times where you don't like any of the options. 

You are a bright woman. You have already figured out that you are not exactly compatible and  that staying your distance while you figure each other out is good.

Keep on posting and let's see if we can make this easier. All is not lost. I would take Michaels offer.

BTW...I do not think they can send you anywhere you do not want to go or to take anything you do not want to take.

BTW2...I would be depressed too. It was a big change and turned out to be quite different than you had pictured and likely threw your illness front and center.


alz+
Posted: Tuesday, June 18, 2019 4:25 AM
Joined: 9/12/2013
Posts: 3560


first of all, I would not be alive without the help of my friends here, esp L lee has provided me some reality checks for many years now. 

I am very slow in grasping situations for what they are, what my role was/is, slow to recognize difference between someone having a meltdown and someone abusing me.

my daughter and I texted today, she was led to believe I went nuts and she had no idea he had been raging at me, it took all afternoon before she understood I was not having a mental crisis (other than shock and fear of more abuse) and was relieved I'm willing to be evaluated. She seemed to get the bigger picture but still they plan to have outside help come in now. Help with what? I will be paying for this. I need some broken floor boards on front porch replaced before they break through, they going to do that for me? 

Iris - did you mention having someone with me at appointments? I would not have thought about having anyone with me - I am time-wise was way slower than the world moves. I would not think of things until a week after appointment. Don't know who that would be?

 will try to sleep.  I used B12 complex and magnesium and new cbd oil tonight, my dog is staying close, she knows I am upset and vulnerable. the atmosphere is very tense.




llee08032
Posted: Tuesday, June 18, 2019 6:43 AM
Joined: 5/20/2014
Posts: 4405


Responding to things being broken or unsafe is not "nuts" or a "behavior." Suggesting that anyone said anything about being "owed a caretaker" could be construed as inciteful. The timing is most certainly inappropriate at the least. 

Let's move on to what's helpful. What will work and not work. Let's make it safe to reach out for help. 



jfkoc
Posted: Tuesday, June 18, 2019 10:02 AM
Joined: 12/4/2011
Posts: 18875


Having someone go with you to your Dr's appointments is a good idea.. I always go with my questions written out and someone else with me. There is no way that I can retain all that is said or remember all of my questions.

I do not know where you are in CA but UCLA and UCSF both have excellent neurologists. I have some names somewhere buried in an old email from JAB and Michael probably has some names also..

Please fix what you need to so that you are safe.

What would you say to some old fashioned roller shades? I think there would be a way to have someone come measure/install.


alz+
Posted: Tuesday, June 18, 2019 10:51 AM
Joined: 9/12/2013
Posts: 3560


Jfkoc -

roller shades would have been perfect.

I am looking for room to rent. No motels around here 45 miles take dogs.

he can have the house. The remodeling will  be for the kids when they inherit the place.

my hands and feet are still ice from shock. Not capable of living here.

can live in a room with a mini fridge and microwave. Other thing would be how to get to another part of state not so expensive but not able to do that - yet.

I thought maybe his anger was from stroke or seizures or afib, this morning I remembered him doing this to me when we were married. I had 6 months to remember that but too late now.



Unforgiven
Posted: Tuesday, June 18, 2019 2:53 PM
Joined: 1/28/2013
Posts: 2661


Alz, take a deep breath, then another and another.  Don't go from one bad situation to an even worse one out of panic.  You are where you are after spending much of your savings, and I hope you can accept that you can no longer live alone.  I was wondering if living with someone you already saw fit to divorce was a wise idea, but here you are.  One thing life has taught me is that men have a limited tolerance for and understanding of women's emotions. Add being a PWD on top of that and you have a guy who simply does not know what to do.  Perhaps what you are sensing as anger from him is simple frustration at your reactions to things when he thinks he has been trying to please you.

You said this happened right after you were attempting to return curtains you had ordered online and it was draining you.  Perhaps he couldn't understand your upset and why you had to return them?  Did they not fit the windows correctly, or was it some other issue?  Yes, curtains, draperies, or shades are quite reasonable when sunlight gets in, but maybe his reaction was because you were upset about them not being right?

Leaving a burner on could not have helped.  How crushing for you to go to all that effort and rather than getting gratitude you got the sort of anger that comes out of fear.  I feel your pain there, I truly do.  But from reading your posts, I sense that you are on a very delicate emotional balance that turns things into black and white.  It sounds like me when I am off my anti-depressants, and I think it would not hurt you to see if something like that could help you maintain your cool when he is being a jerk.  It also might not hurt for the two of you to talk to a counselor about making your roommate relationship run a lot more smoothly.

Besides, people who live together will become irritated from time to time.  Every married couple knows this, but with your condition it makes it doubly hard for you to handle.  Please don't shoot yourself in the foot by running from this bump in the road.


Iris L.
Posted: Tuesday, June 18, 2019 5:12 PM
Joined: 12/15/2011
Posts: 16579


Alz+, I don't have more to add than I had before--that you need to limit contact and to let others handle household responsibilities.  Handling things is too much for me and I believe they are too much for you, too.  


You have always been a free spirit.  It is time to rein that in a bit.  Focus on yourself.  I can't even fathom what's going on with the curtains or the floor.  You should not be involved in that.  


If you have separate bedrooms, you might be able to manage.  When I was in school I had a roommate that I rarely spoke with because we were so busy and only saw each other at night.  


Speak to your daughter about having someone bring meals, or get Meals on Wheels.  Then you will have contact with an outside person once a day.  Let the dog go in and out a few times a day.  Peace and quiet is my goal. 


Iris L.


Unforgiven
Posted: Tuesday, June 18, 2019 7:04 PM
Joined: 1/28/2013
Posts: 2661


I think I have a bit of an idea what's going on with the curtains and the floor, because I've been there myself.  Sometimes people who live alone, like Habib, let things slide, like proper window treatments and loose boards in a floor.  They tolerate them and it's no big deal because it's familiar.  But someone new to the situation, like Alz, sees the problem right away and wants to fix it.  Which is great if they are up to the task but not if it's an extra stressor.  I mean, why should Alz be responsible for putting up and taking down bedsheets or calling a handyman to come fix the boards?  Certainly Alz should not be responsible for cooking and cleaning other than her own space, and if that was the agreement, well, it's wackadoo!

This situation needs a mediator badly. And the house maybe needs a person who comes in a few days a week and makes sure things are going smoothly.


llee08032
Posted: Wednesday, June 19, 2019 5:27 AM
Joined: 5/20/2014
Posts: 4405


I agree with Unforgiven, going from one bad situation to possibly another worse situation is not the solution. There has to be an adjustment "curve" here and a "settling in" period before the determination can be made that living together is an impossible situation. When is your daughter coming? She can help mediate. If the conclusion is that you can't live together maybe things will be more tolerable over the short term while you have some time to make plans? A small apartment near your daughter somewhere with some in home care and supports in place that may be covered by your insurance? 
alz+
Posted: Wednesday, June 19, 2019 11:32 AM
Joined: 9/12/2013
Posts: 3560


Unforgiven! Iris, L lee - everyone -

if you haven't needed desperate help and found it here, you have no idea how important you are.

These quiet, smart, intelligent, compassionate replies opened my heart and my eyes.

My daughter let me apply for apartments and the studio online, agreed with me for a couple hours about how her friend could help me move etc etc etc.

Then she sent me this:

Stay where you are. Make it work Mom.

At same time ! my super smart and genius friends here were saying same thing. I let it sink in. I did finally sleep last night and woke up knowing I really have to stay where I am because it makes sense, economic and survival level sense.

Yesterday Habib was Over It, like it never happened. No one called me back about rental applications. I have appointment with doctor in July to assess what people call my "depression". I don't think I am, have been before, still take mini dose Zoloft, but if I manage my environment and finish the Set Up (I know it is environment that determines function and cognitive and content parts of me) then maybe my daughter and Habib will stop calling me depressed and understand how wonderful it is to move your life toward where you feel safer. from that state a cognitively impaired person can relax. Without tension there is no anxiety. Depression (for me) comes from feeling unable or unworthy of making my situation better.

UPS picked up my return box of curtains. The dog is happy again. 

So having these episodes is not abuse if the person receiving rage words and motions is cognitively impaired. No one has ever successfully reported to authorities one claim of emotional abuse. Being shoved, cornered, having your door pushed open, all that stuff is just part of it.

I was resistant to that idea and was imagining being a champion of dementia people by refusing to accept it, demanding safe spaces and stuff, making sh-- mean something more than it is.

****

Forge Meaning at Ted Talks  (youtube to the rescue too)

I do not want to spend a moment in anger, hate, fear but when it comes around again I will forgive myself quickly and move away from problem. Habib always had these episodes but we divorced and lived very near each other to raise our kids for years and then I was gone for 30 years. I didn't know.

I am here, have a room, great mattress. My dog can roam in yard and has friends. For now I can walk some days to grocery. I am accepting the approach of end of life is still clay in my hands for a little while longer.

****

thank you. if you haven't needed and gotten this kind of daily support you people are best medicine that exists. To be understood and defended, to remember what compassion through strength looks like, sounds like ... I cry those good tears when I read your messages.

Carrying around a purple blanket like Linus Von Pelt ! It is shield of love from a friend and protects me from insults and provocations. Thankfully his anger has passed for awhile.

crisis has passed, staying put, it ain't perfect but it's home



jfkoc
Posted: Wednesday, June 19, 2019 12:22 PM
Joined: 12/4/2011
Posts: 18875


we help each other...that's how it works, yes?
Unforgiven
Posted: Wednesday, June 19, 2019 4:09 PM
Joined: 1/28/2013
Posts: 2661


Alz, let me help you a little by talking about me, because I think we had the same kind of mother.  Nothing was ever good enough for her, right?  In addition, my mother used to have hysterical meltdowns where she threw things, something a child should never have to go through.  As a result, I grew up hypervigilant, almost like a prey animal.  It's why I get along so well with horses.  As a prey animal, a horse's first instinct is to run and ask questions later, but sometimes they run into roads and other dangers.  Not good.  I have learned not to run, but it comes at a physical price.

I have CPTSD and an anxiety disorder, and it would not surprise me if you were the same.  Any unpleasantness, especially anger, from someone important to me affects me horribly.  It's as if I project my mother onto them, and I overreact inside.  The problem is that anger is ghe natural result of fear and frustration, and often, people who don't know better can use 'rage' words or make it sound like a personal attack, when maybe it really isn't that.  I normally don't go in for cognitive therapy, but I think you just threw a good scare into Habib with the stove and he reacted with emotion, obviously not the best way.  And obviously he knows nothing about how PWD think and react.  The truth is that none of us caregivers do at the start, or even at the end.  Maybe seeing him as a fallible human being can help you make this work and feel a little bit better.

I've been away for a year, getting my head straight, understanding myself and getting the chemical help I will always need, no shame in it.  You may not feel depressed, but low serotonin can make a person very sensitive to stress from others.  I liken it to worn out brake pads and metal grinding on metal.  They finally talked me into Cymbalta, and so far so good.  I also need some form of anti-anxiety medication for those situations where my hypersensitivity to stress turns me into my own worst enemy.  I'm taking every bit of help I can get, and I do feel better.  I hope you can too.


Iris L.
Posted: Wednesday, June 19, 2019 8:13 PM
Joined: 12/15/2011
Posts: 16579


Alz+, it seems that both you and Habib are in need of caretaking.  You are both stressing each other out.  Let things go!  Let an outside person do the caretaking.  You two just live your lives and enjoy your home and your animals.  You can make it work.  I can't write much now, I went to Memory Club and to my cardiologist's appointment today.  Now I am resting.

Iris


alz+
Posted: Thursday, June 20, 2019 11:26 AM
Joined: 9/12/2013
Posts: 3560


Iris - yes, I agree.

It took a few weeks to see he  is in no condition to do anything for me.

Unforgiven - what beautiful things you write to help me. Your insight is profound.

My mother had psychotic episode before I was born and we did not bond as she was put in a hospital (and tortured she later told me about it). Then she used me to absorb her anger. What you describe about the ptsd stuff is what I have recently learned from those videos I found by Gabor Mate - once I understood my brain did not develop response mechanism (can't think of right word) because I did not have those trusting bonds, and then was told I was responsible for keeping her out of hospitals after her second breakdown and horrific electroshock treatments at 9 years old, well I didn't develop any self defence brain patterns either.

That made me a target for attacks, sexual and physical. I married Habib without even knowing him because he seemed to know how to live int he world.

The ptsd thing is in fact brain damage, and yet by applying Mate's technique (feel feeling, ask when it began, realize not helpless now (?) to handle stuff find way to protect myself without responding in kind - the suffering part ends pretty fast.

Being away from my church has taken away weekly method of coming back to normal and I do understand the hard truth that there is not perfect place for dementia patients and at this point - it has been a good fight. If I make my children's anxiety level my focus, to do things that calm them down so they don't give up their lives over every upset, I can follow that path I think.

Plus my daughter has good grasp on what I can do and what I can't. 

Knowing I have all these smart compassionate skilled people to turn too has also changed my brain and opened my heart again.

I just love you all so much.