RSS Feed Print
family agrees I am problem to be extra medicated
alz+
Posted: Wednesday, July 3, 2019 6:36 AM
Joined: 9/12/2013
Posts: 3608


apparently I am unaware that I am angry, upset, confused, and paranoid - a lot.

first (My dog is feeling better, she appreciated when she laid on her back and I rocked her bloated belly. She made soft sounds and eye contact. It was wonderful. Closest we have ever been. Vet said had parasite and maybe urinary infection. Meds working. She is eating again and sleeping by me now, good snore again)

Now I spent 2 hours writing this, tried to make it shorter, can't seem to. I am aware I am confused but still edit sentences for fun. who cares?

So because I showed immediate loud concern about not finding the phone when the Veterinarian was calling me back about my sick dog and I yelled "where is the darn* phone?" that turned into Habib weeping, looking at me like I'm a monster, claiming he is "afraid" of me, that I am "so hostile" etc etc that I "need to be in assisted living." 

Looks down at his hands and appears sad. I assumed he is telling me to leave, again. He left to get dog meds.

I came into my room and began to shake. I tell myself he has his own disabilities, that I'm lucky to have a room and bed for today and still have my dog. I'm shaking thinking here come shingles. He just told me to get out, but very quietly. I heard him, I believed him. He implied I am violent and dangerous. My daughter is texting with him every day and believes him.

Then I get email from concerned daughter that for sure now I need meds because I am so often angry, upset confused, and paranoid and I need to let this doctor next week give me some things. "she knows this can happen", meaning that I imagined the screaming tirade of Habib. No mention of him telling me I need to go to assisted living. 

Turns out Habib told her he never said that to me. She believes him. She said I can stay here, "he wants you there."  ????!!!! he called me dangerous, said he feels threatened by me walking past him. denies the assisted living comment.

Supposing his 3 day tirade (couple weeks back) was in my imagination, what was I doing while imagining it? was I hiding in a stupor in my room? doesn't that seem odd? I viceraly recall the aftereffects of being told he wanted me gone, he'd "drive me to the airport" and I can still feel myself recovering from the shock, fear, thinking I'm homeless...now being told I made it up? again?

I'm still shaking at 3am. I think this altered my brain. 

 So if I go to this doctor next week, and she offers some drugs, if I were to refuse these drugs, I fear i could be forcibly put some place. This super kind sweet talk about how "confused" I am - How they want to make me "happy". I think I am as happy as I am capable of being. I thought I was doing brilliantly considering the situation.

who is going to determine if I am imagining things? if they want to force medicating me and I refuse, can they make me? 

when I read that she doesn't believe me  - I felt my - awareness begin to wither.  I stopped caring. The condition has progressed, stiffness, weakness, vision loss,  hard to hear stuff. It must look worse than I feel about it. I belong nowhere now. It is a quiet experience. Snapped off some part inside. I feel physically different.

 I watered plants yesterday and hosed off rocks in a small patch of plants by front door. I was so content, what are people seeing instead?

 I'm blind to how difficult it is to have me even nearby.

 3am and I'm wondering if need a lawyer more than a doctor.  too late.

I sat under the stars with my solar lantern on and my purple blanket around me. I talk to myself - feels like sorting deleting photo files,  and typical alz muterrings. Incredibly lonely and mourning leaving my life behind. no options, no choices.

*****

 anyone have medication make them a lot more likable?

 Did any medication help fear, anxiety, paranoia and if so did you know you "needed them"? 

How did they improve life?


yogi60
Posted: Wednesday, July 3, 2019 8:36 AM
Joined: 2/22/2017
Posts: 78


I am so very sorry for the stress and difficulty of this move on you and your dog. Any move is unsettling, but to move with an illness, so much harder. I hope the stresses smooth out for all of you. I follow your posts and think about you often.

My DH of 33 years, young onset bvFTD, takes an anti-depressent, anti-psychotic, and anti-anxiety, and our world still rocks and rolls around what his brain tells him to be true. The drugs help calm him. Before them, he was a hot mess and I was falling apart at his verbal and once physical abuse towards me. He was unconcerned and uncaring about the stress and chaos that his illness brought us. He never, in his right mind, would have wanted me (us) to live like that. In my world, for me to care for DH, he has to be medicated. It's safer for me, and he is easier to live with. I want him home with me for as long as it's possible and the drugs absolutely help.


Jo C.
Posted: Wednesday, July 3, 2019 9:08 AM
Joined: 12/9/2011
Posts: 12279


So glad to hear your beloved fur friend is doing better; that must be a great relief.  Good job getting her to the vet.  She really sounds happy about her new home setting.

 As to the other concerns:

1.  This is one of those times that it may seem that nothing is feeling right, and of course one cannot see into the future for what is going to happen. Being human, we tend to over worry secondary to imagining all sorts of things as an outcome.  We all tend to do this at one time or another.

 As yogi has shared in her Post, sometimes, because of our illness, we do not feel or see the upsets we may be contributing to others and this as she said, can lead to chaos for those living together.  That is a valid concern but hard to glean when there has been damage to that portion of the brain that can process that.

 2.  It is important to remember that all of us will have our own interpretations of how things are going and what another person has actually meant by what they have said, and not all of us will be on the same page in how we are seeing and interpreting matters.

3.  To complicate matters even more, you have a significant hearing loss which has been quite problematic with trying to communicate which has led to significant misunderstandings and may be contributing to the dynamics now.  It may be that some of the time, in some instances, you have not been hearing and processing things accurately. (I'm not saying all of the time.) 

 4.  In such situations, when hearing has been compromised, is very poor, and not all is crystal clear, the mind will often fill in blanks from mishearing or not hearing, and the mind does not always do that accurately.   No matter that it is a an inaccurate filling in of those hearing blanks, the mind accepts that as truth.   Really frustrating and can lead to many misunderstandings and upsets.  That is not uncommon.

5.  As for your daughter; it may be she is basing her understanding of issues based on her own personal experience and not as you imagine it to be.

6.  When reading your Posts regarding when your daughter had traveled to Northern Michigan to help you get the house ready and help you to get packed and get things together for your big move; and also in your writings regarding the initial part of your driving journey with your daughter across country to California, you were experiencing major emotional breakdowns with a great amount of active emotional upset.

Understandable under the circumstances.  At times, per your writing, your daughter was unable to manage some of the intensity of these experiences during clearing and packing, I seem to recall that at one point you mentioned she had tears and had even left for awhile to allow some space for both of you.

7.  These experiences may be what your daughter is recalling when she speaks of behaviors and actions.  What she shared with you may not be based on communications with Mr. H., but rather on what she herself has experienced over time.

Whatever the concerns of your Loved Ones, it is really good that you are seeing the doctor and getting a good exam; that is very wise of you. 

8.  I do however wish that you would not be going to the doctor alone, but that someone would be going with you.   It is difficult to hear and recall things especially with hearing loss and also difficulty processing things accurately when dementia has reached a certain state.  When there is hearing loss, it would be good to have someone who can be spot on with the doctors questions and communications; especially for what the future plan of care will be; otherwise important things might be missed or misunderstood.

 9.  Since it appears you will be going to the appointment by yourself, it would be far best to ask the doctor to contact your daughter to discuss the visit and recommendations with her; you really need someone solid to be in the loop along with you.

10.  Suggestion:  Before you go to the doctor, please make a list of ALL meds you take including the herbal, and over the counter; even if you only take them once in awhile; that is crucially important.  This includes the marijuana and CBD oil. This is all important information when doctor is assessing and prescribing.  In fact, do bring the meds with you in a bag and ask the doctor to check for expiration dates on all of them.

 11.  A list of your own questions and concerns would also be good to take with you so that you do not forget to mention these things as so often happens when we have such appointments.  I find this very helpful for myself; you may too. 

12.  Before resisting medication, it would be a good idea to let the doctor know your feelings and why you feel the way you do and discuss it.    It also may well be that past distress with other meds may not happen with any new prescription.  I can only imagine what a relief it would be to have a medication that can relieve much of this for you and not have to keep trying to mix things up by oneself to try and find peaceful relief which has so often been elusive.  

You are doing your best with what you have at this moment in time; this will all evolve.   One foot in front of the other; one thing at a time, you have been doing well cosidering the major life changes you are experiencing.   It takes time which is the most frustrating of all.  Boy; that word "time," sure does come up a lot in all of this.

 Big hug, hang on, it has been a bumpy ride, but I am willing to bet there will be clearer weather ahead.  I will be thinking of you, and I truly do care.

 J.

  


Iris L.
Posted: Wednesday, July 3, 2019 10:02 AM
Joined: 12/15/2011
Posts: 17709


Wow.  I'm glad the dog is better.  If medication can help the situation, let it. You had been living alone for some time.  It takes adjustment to live with another.  You both have to become accommodating of one another.  Does anyone come to your house?  Is your daughter still in Michigan at the old house? I don't like the idea of all that texting back and forth.  

Iris


Unforgiven
Posted: Wednesday, July 3, 2019 10:19 AM
Joined: 1/28/2013
Posts: 2660


You ask if any medication ever helped me be more likeable, less anxious, etc.  I give a resounding yes.

I was initially uncertain about anti-depressants when my doctor first suggested them back in 1998, but I gave it a try and noticed a huge difference.  I slept better.  My social anxiety went away, and I became more outgoing, thus more likable.  My severe phobia about driving became managable.  And I felt moments of happiness for the first time in a long time.  The medication was Paxil, an SSRI.  I also brlieve that if I had bedn given an snti-anxiety med like Xanax, I would not have had to take blood pressure meds, since my elevated readings were only sporadic.

I went off the Paxil for a time, but had to resume when my mother moved in with us.  After learning that untreated clinical depression is a risk factor for later dementia  I will remain on some form of anti-depressant for the rest of my life.  This is something that genetics and environment have dictated for me, no shame in it.  I now have the ability to let many things roll off my shoulders that would have made me miserable before.  As I said before, you and I kind of grew up in the same environment, so you may be a lot like me, only with the extra stress of living with dementia.

I feel so much better with a little medical help, so I know I needed them.  I knew I needed an anti-anxiety med --my psychiatrist ultimately agreed with me -- once I had jumped through all the hoops to get it.

I don't feel dulled down by these meds.  I feel more alive, not so fatigued by always having to be on guard against potential threats.  Of course, as they say, your mileage may vary, but I would urge you to keep an open mind about this and give it a try.


alz+
Posted: Wednesday, July 3, 2019 8:15 PM
Joined: 9/12/2013
Posts: 3608


so lucky to have all of you speak to me so clearly!

Jo C - you took all that time to speak specificly to me, referenced my past posts! there is no counselor in world who could have done what you did there. 

Starting to Get It.

what I feel as Panic - is seen as Anger

Not being able to find a phone, panic. Habib hears Anger

the hearing loss - I have quit trying to have conversations - Lonely, solitary confinement to me,  Sullen, unhappy, angry to Habib

You wrote about this so perfectly, never read anything like that before. Please make that a saved post if possible.

****

I could not stop the shaking (panic pre-panic attack state) so instead of smoking some cannabis I took half an Ativan. Totally out of it, stayed in bed and slept the day away. Have paper and pen to note when/if I urinate again over next couple days and other unpleasant side effects if any, aside from intestinal blockage has to be managed before it happens.

Went to check on my dog, Habib was sorting her pills, dumped on table. I said, "She is out of pain now so she doesn't need the pain pills maybe."

He stopped moving and said "YOU want to do it now?"

Me - panic, anger, confusion, FEAR

Back in bed room.

***

YOGI60 - I have read about violent men, or a stronger person or anyone really who are lashing out and dangerous.  Seems like the time has come to give up preferences, even some needs and let nature take its course. This is helping me open up to being medicated so I don't panic (appropriately or fake), don't get mad about anything just concentrate on keeping my room quiet and bed clean, have dog dishes in here and water in bottles so I can stay in here now.

Your experience is valuable, easier to understand what is happening if it isn't about myself, a broader less prejudiced view. Plus I have declined every time my daughter sees me, so I understand her position A LOT more clearly after reading the posts here. How would I find that help without you?

****

Unforgiven - Is your anti anxiety medication something new? I have ativan to take as needed but don't use it because when living alone I could not manage house and dog at all, or myself. Could not go for walk or anything. Also, it relaxes my intestines to point I get blockages - took me 4 years to figure it out, went to ER many times. also I quit urinating, nothing in my bladder. I never asked for anything else. I took a half today and slept for hours. Have not peed since 10am. Keeping a log to try different things to restart them. Lemon water, vitamin C mega dose sometimes helped a little. Last for 2+ days in past. I take 25mg Zoloft at night. Was given other antidepressants for wrong diagnosed as bipolar (had ALZ) and had horrific suicidal reactions to most of them. 

The the thing I get is now is time to be thinking more of those who are stuck cleaning up my life. Take meds that make me what makes them comfortable. Let nature do what it wants. Not be vigilant (like living alone) about safety, give up responsibility. I have been a Finn survivalist always be prepared take care of a small problem to avoid big costly problems person like my Dad.

If there are medications available to ease our fear/panic/anxiety would someone make a short list of ones safe for ALZ? I can try to find info online but I am struggling to even type out stuff, hours to edit - tired of writing but helps the loneliness.

THANK YOU ALL. I can't believe how lucky I am to blather distress signals and get such beautiful responses!

IRIS - the texting thing is creepy. sometimes they text about me while I was trying to communicate with them, "clear things up". I thought different information would help people understand and STOP BEING MAD AT ME. This turned out to be a false idea I had held since early childhood. You know - you say something to someone and they keep their back to you and don't respond, then walk closer and find they are crying, overwhelmed in grief, not ignoring you. More information changes perceptions changes feelings and reactions.

so with my situation daughter is preparing for estate sale, Keeper is helping her. so 2 ex husbands and my daughter texting about me. None paid attention to when I was "doing good" but panic is now doctrine anger, rage etc.

I feel like a problem and no one wants to wait for me to say what I mean - it is hard to speak now, and being deaf. The texting feels dehumanizing which is too painful, so I am calling it how they comfort eachother and develop a way to provide me a bedroom to live in and not have to go to a nursing home or wherever.

Thank you for mentioning it. This is how it goes now. Can't fight it, time to stop fighting any of it. Just relax, take the meds, coast thru this stage and maybe drop dead of something easy. No one wants me to teach them the Mystery Secret To Caring For Alzheimer's methods. Hard to be alive for estate sale too. My son is arriving there tomorrow. They are having a party, neighbors coming over.

******

You people are so valuable to me! So articulate, how you listen deeply, your kindness. I am crying (happy!) with relief. Have not cried hard in awhile (unhappy, etc etc).

I will use my snarkiness here instead of the people around me. Ha! there is only 1 person around me and he avoids me and isn't speaking, thank God!

Giving up my fantasy of being the Great Mother who lived and died with Alzheimer's handling it all with such grace! such composure! Lots of insights pouring into me.


I thought these meds were 



Iris L.
Posted: Wednesday, July 3, 2019 10:15 PM
Joined: 12/15/2011
Posts: 17709


I noticed a LONG time ago that PWDs and caregivers may have different viewpoints about the same event.  Even opposite viewpoints.  Dealing with dementia is not like dealing with other diseases.  There is a steep learning curve and most caregivers don't seem to be able to approach anywhere near the top of the curve.  


After a certain point, PWDs cannot be as interactive as they used to be; they have to learn to go with the flow.  That's where you are now, Alz+.  You must try to relax and focus on your priorities-- keeping a roof over your and your dog's heads.  Let the others do the heavy lifting.  


You have been on your own for a long time.  It will be hard to adapt to being a care recipient, but keep at it.  Consider the alternative.  


And yes, Jo C gave you a comprehensive summation of your situation including your past and your daughter that I doubt a therapist could come up with.  Yogi and Unforgiven gave you valuable personal insights that you can relate to.  This is why I appreciate these boards so much.  We cannot find the WISDOM in the outside world what we can find here! 


Iris


alz+
Posted: Thursday, July 4, 2019 10:22 AM
Joined: 9/12/2013
Posts: 3608


Iris -

I count on you and others here to explain what I can not see in my behavior.

I did not pee until 7am after taking Ativan at 9am yesterday. That I could pee this morning was reassuring. I took B12 complex, vitamin C and lemon water in evening to counteract side effects.

Last night my daughter was so happy I got help here! I was not seeing things from their side. I am astounded at Jo C's post. Perfect tone, so clear, relevant references, insight, connecting things. When I was reading it I was in shock! I guess she helps people so often for so many years she has storehouse of insight. Besides I trust her advice so I was open to learning. I had mental tunnel vision, matches my visual tunnel vision.

bottom line: the thing I can do is make those around me feel more comfortable and my idea of crusader for patient rights was ... delusional.

I do know Habib is telling His Side to my daughter and others, this was second time he threatened to make me leave.

I told Habib last night that he was right :

"It was so helpful and important I understand I misheard you about assisted living. I recall we had other discussions about it and you knew I didn't think I could afford it or do well in it, and when I misheard you say "you belong in assisted living" I panicked. So if I can be that mistaken,  twice, you should take over responsibility for all now. I will take medication to keep me content."

His face! priceless. Now, asthma. Not my problem. He is in kitchen sorting through his pile of my dog's medicines. (If I do think he is messing up I will ask daughter what to do because my family will NOT allow a dog to be harmed under any circumstances.

so here I am in bed, door locked, and might skip oil until doctor appointment next week to see what my condition is without the fuel added.

********

             Hope I get some drug names that helped people before doctor appointment -                                              maybe give ideas to doctor.

******

writing is a chore now, my last skill dissolving, takes long time and editing harder to do.  not much pleasure in it. 

                                                       love and courage



jfkoc
Posted: Thursday, July 4, 2019 11:34 AM
Joined: 12/4/2011
Posts: 20398


Extra medicated?????

Those words speak a lot. Fear? Anger? 

How about some medication to make you more comfortable. Listen to what the Dr has to say. See what he recommends. You can start on a very low dosage and titrate up. It may take a while to find what works for you.

If he prescribes starting with Haldol find another Dr..... lol.

Start writing down information to share. The more puzzle pieces the better for her/him to see the whole picture of you.


Iris L.
Posted: Thursday, July 4, 2019 2:27 PM
Joined: 12/15/2011
Posts: 17709


IMHO, you both belong in assisted living.  I see assisted living as a concept in which the resident (you) is released from outside chores such as cooking, shopping, laundry, paying bills and handling medications.  The resident (you) can focus on self-care and living with less stress.  In other words, you can live assisted at home.  


It appears that both of you need relief from the strains of daily household work.  You're on the right path.  I think your writing skills will resume when you are less stressed.

 

Iris