irrational behavior after stroke

[kristina38]

It seems like there are so many positive people on this board, it's refreshing after dealing with total negativity all day every day. I have some questions as to how you all deal with negativity in the survivors you care for. My Mother has decided that today she is not eating (this is to punish me because she's mad at me for making her use the toilet). She basically refuses to do much of anything but lay in bed and feel sorry for herself. Not that she doesn't deserve to after all she's been through but it is so counterproductive and she has made progress with regaining some of her leg movement. The therapists are even starting to have enough of her refusal to do ANYTHING to help herself. She told us the other day she just wants to die. She was on anti depressants (Zoloft) for awhile but it made her angry and almost demented at times. She has taken to telling me she is going to call people on me (I'm assuming because I'm so mean and make her do horrible things like eat). She also had sundowners while in the hospital and would become combative with the staff to the point they sometimes would put her in restraints. She's not been violent so far at home although she has slapped her OT on the hand for moving her arm. Her PT today spent basically their entire session trying to cajole her into getting up and explaining that if she doesn't try they can't continue to come and visit...She seems to want to sleep all day then act crazy all night talking about things in the mirror...It's hard to figure out what she is talking about all the time with the aphasia but she seems to think that the mirrors in her room are not mirrors but windows...She'll scream for me at all hours of the night to "knock on the window" like someone is out there. I've explained over and over that they are MIRRORS but two nights later it'll be the same damn thing. It seems like this stroke has turned my Mother, who was a very stoical person and very caring and loving into a drama queen from hell. She's been home for five weeks today and I can't remember the last day we got through without a huge argument of some kind. The hardest part is the short term memory loss, she won't remember later that we were fighting, or if she does she doesn't let on...Sometimes she acts totally normal other than the aphasia and physical handicap so I know she's still in there but I don't think I can keep this up much longer. The PT asked me today how on earth I can continue to do this at the current level of care I have to give plus the abuse and combativeness...I told her I don't know I may need to get a Postal job lol...I really don't know what to do at this point, getting mad doesn't help, pleading and explaining and cajoling doesn't help and she seems content to just lay in that bed and have everything done for her. Is there any way of motivating her? Her OT told her she is to get up 3 times a day and do her exercises, I'm lucky if I can get her up to use the toilet...

[marlen]

KRISTINA,

 

BEFORE YOU BUY A SHOTGUN, GO TO THE TELEPHONE, CALL HER DOCTOR AND EXPLAIN THE SITUATION. THERE ARE MEDICATIONS AVAILABLE TO HELP REMEDY HER RESPONSES OR LEAST MAKE LIFE MORE TOLERABLE. EVERYBODY REACTS DIFFERENTLY TO A STROKE, AND I THINK ALL OF US ARE IRRATIONAL AT FIRST. THEN IT SINKS IN AND WE TRY TO GET ON WITH LIFE.

 

YOU CAN PUSH, THE THERAPISTS CAN PUSH, BUT UNTIL YOUR MOTHER REALIZES GETTING BETTER MEANS HER PARTICIPATION AS WELL, YOU'RE BANGING YOUR HEAD AGAINST A BRICK WALL.

 

OK, MAKE THAT PHONE CALL.

 

MARTY

[kristina38]

Thanks Marty, I need to call her doctor anyway so I'll touch base with him about this behavior, it seems to be getting worse not better. I really hate the idea of anti depressants because they really seem to just zombie her out and the xanax didn't seem to do much either. She still cried constantly in between bouts of anger. Sometimes I feel she's just being manipulative and in essence controlling the only thing she has control over which seems to be me lol...What she doesn't seem to understand is there are only so many hours I can go without sleep before I will get sick and the whole ship sinks...I think in five weeks I can count on one hand how many times I've slept for more than two hours at a time...Maybe I should take her Xanax, they might help me more than they helped her lmao...

[bstockman]

Yes as Marty says call her doctor, there are many antidepressants and it may take a few tries to find the right one or combination.

 

Can you cover the mirrors or remove them for awhile..

 

When was her stroke? I did sleep a lot the first few weeks. but I was very motivated to walk and use my arm again....

 

there are a lot of caregivers here so I am sure you will get some excellent input.

 

God Bless Bonnie

[kristina38]

Bonnie, I did take the smaller mirror out of the room, the large one is attached to the dresser, I suppose I could cover it with a sheet or something but that's getting a little adam's familyish for me lol...She had her stroke six months ago although she just came home from the hospital and rehab five weeks ago...She had many many complications, some due to the stroke and some due to the incompetence of the hospital staff so it's not surprising she's worn out at times. She has four seperate decubitus wounds two of which are stage four that we are still battling with to heal...The one's on her heel and achilles were so bad the doctor tried to talk me into letting him amputate it a few weeks ago...I refused and told him they are healing it's just taking time (the nurses that come in from Home Health agree with me as well). He ended up debriding it again as he never finished debriding it the first time. I think the wounds actually are the biggest problem. Their healing takes up all her energy and it's hard to get her to eat like she should...They have her on a high protein diet to aid in wound healing but she never was a big eater so it's a challenge to find things she'll eat and eat enough of...I think the wounds really take a mental toll on her as well...They are ghastly to look at and she can see the one on her foot when I dress it, thankfully she can't see the one on her rear or she'd really have a fit. She seems to be out of her bad mood for the time being and I managed to get her to eat a peanut butter and jelly sandwich with a big glass of milk...I guess she won't turn me into the authorities just yet lol...

[kristina38]

Well, I've taken the posters advice and we are trying a new anti -depressant (Paxil). I've appeased her OT and PT enough so they will continue to see her (for how long I don't know unless she puts forth some effort). He had also ordered a urinalysis because her urine was cloudy and she does have an infection we are treating now with antibiotics. Not sure how much extra fatigue the infection maybe causing so hopefully these changes will help some. At this point if someone told me standing on the roof quacking like a duck would help I'd TRY IT lol...

[Kj mcmeekin]

Hi Kristina:

 

I am caregiver for my husband. It sounds like you are going through what I did with Chris after his stroke. Chris' stroke was the right side and also hit the frontal portion of his brain. When he was in ICU nothing showed with the personality change - but when he was transferred to the step down floor it was like Jeckel and Hyde. He was nasty, especially to me but also to the nurse's, he would yell at anyone who tried to help him or touch his affected side. After about 5 weeks in the hospital the neurologist deceided to have a psych consult. Chris' impulse center of his brain was affected by the stroke and what was happening was totally out of his control.

 

If your mother has not had a psych consult maybe this should be done. Chris was placed on 2 anti-depressants and Depakote, which is normally used for seizure control. The depakote was the answer. Shortly after starting to take it Chris started to return to the person he was before the stroke.

 

You really are going through a tough situation, I would immediately call her doctor and spend some time talking to him - let him know what you are going through. Also Chris was very depressed and angry after his 2nd stroke. He would only lay in bed and when the nurse's tried to get him out of bed he really created a scene. He was then seen by a clinical social worker who tried to help him sort out his feelings and give him some hope.

 

Stay in Touch and let us know how things are going................

 

Kim

[arogers]

Hi Kristina,

 

I am caregiver to my husband and I do understand your frustration. Someone here on the board says it best - "caregiving is not for sissies".

 

My husband has gone through so many changes, I am thankful everyday we haven't dealt with anger, and I think that's the only emotion we've not experienced.

 

I have gained so much hope here in reading that sleep is normal post stroke, and a sign the brain is healing. I've also learned that many of the actions are a result of the brain injury - not the person - and he isn't even aware of his actions. In other words, when the going gets tough, I remember him pre-stroke and keep on trucking!

 

Bless your heart for caring for your Mom......My mom had two strokes late in life, and her personality became a little more "challenging" (as if it hadn't been before the stroke). It would have been impossible for me to care for her - she lived with us for 6 months, was ambulatory and pretty self-sufficient, but oh the challenge.

 

God bless you for your care - even if the situation doesn't improve over night, the support here will certainly help!!

[kristina38]

Thanks everyone for the support. I know they say most anti -depressants can take a couple of weeks to work but it seems the past two days since we started on the paxil that she is much better. She only cried a couple times yesterday and was basically pleasant all day. She only woke me up twice during the night and that was to readjust her in the bed (she has an airmattress and tends to slide down it). She's been good so far this morning as well and only cried during dressing changes which ARE somewhat painful. She even got up in her wheel chair and read the paper and had breakfast at the table. Her OT was shocked when he arrived and she was already up and at the table lol...I have my fingers crossed that this will continue. She even seems to be communicating better last night and this morning, maybe it's not the pills but just a healing cycle. She seems to do it in cycles where she'll get much better quickly for a short time then kinda go dormant for awhile then repeat the process...

[kristina38]

Pam, yes, I've heard of EL and I'm quite sure that she is experiencing that as she has said she doesn't know why she cries sometimes. This is day two on the Paxil and she's still very pleasant and cheerful, it's amazing really. She's like a new person these past couple of days and I'm not sure what brought it about but I'm very very thankful whatever it was lol...It's almost like having my old Mom back! She's now 6 months post stroke but as I've said before she really never got a chance to start healing the damage caused by the stroke because she had so many other complications that were life threatening and her body can only fight so many battles at once. Now that her other problems have been cured or stabilized it seems the stroke damage is beginning to be addressed by the body. Anyhow these past two days have been worth all the work and tears the past six months...

Kristina

[dmp]

I definitely agree with the other CGs who recommend working with the doctor to find the right medication, or probably, combination of medications. My mom's stroke (4+ yrs ago) resulted in some of the same behaviors: very anxious (she was throwing pillows and kleenex boxes while in the nursing home right after her stroke), calling for us all night long, depressed, unmotivated to do anything--a total departure from her pre-stroke personality. Anyway, it took a while, but we finally did get the right combo of meds. She does tire easily, but you know that fatigue is a part of the stroke since everything is much harder for the patient to do (including thinking) and that is exhausting. But, she does have a much better quality of life now (which is easier for the caregiver, too). It's a tough road, but you have to be persistent with the docs, etc.

 

[bstockman]

Glad to hear your mom is doing better. definatley hope it continues for you and her.

I had to take antibiotics a few months after stroke for something(?) I don't know why but it seemed to help.

I read somewhere that antibiotics can help.. I wish I could remember where I read that.

I fyour mom is fighting all the infections on top of the stroke....as you say you can only fight so many battles at once.

 

Will definately hope for continued improvement

 

Best wishes to you and yours Bonnie

[durfy2003]

Kristina, when I read your posts i feel that you have crawled into my mind and asked the things I needed too. One of the responces I read was that the stroke survivor needs the sleep to heal the brain. I'm sure glad someone said thaty because it answers one of my problems with mom. Since she got home all she wants to do is sleep or lay in bed. She also doesn't want anything to do with her therapists, but paet of that is because they are young women. If it were a male therapist she wouldn't have a problem. She has a male home visit nurse and she just loves him. I also know the problem wiht your mom not eating, we had to have a feeding tube put in mom and now she refuses to eat and refuses to let us put food in her feeding tube. We could force her, but it is very hard for us to go against her

We still haven't got mom on any anti-depressant. We took her to her family doctor and would you believe he dosen't have a handicapp acsess ramp. We sat outside in the heat for an hour, because he was going to come out and talk to her, then after an hour, he sent his nurse out to tell us her file was too complicated and he just didn't have the time to go through it all. They made us another appt. but my sister and I were so livid we cancelled it and found her another doctor, and now she is having a fit over that. We just can't win. Well thanks for listening to my rambling Becky

[kristina38]

LOL Becky, my Mom is the SAME way, she loves her OT and he's MALE, the rest of her therapists she's not too keen on and she can take or leave her nurses which are all female...She can be in the worst mood and being ornery and her OT shows up and she's all smiles and giggles lmao...We had a GREAT day today which makes two whole days in a row! She was pleasant through the morning, got her bed bath and hair washed and then her PT showed up and she even smiled and was pleasant towards her lol...When she asked Mom to do one more sit to stand exercise my Mom said "I can't, but I will"...The PT said it almost made her cry she was so happy that Mom was TRYING...She then continued to work all through her session and had the PT take her out to the breakfast table to read the paper and wait for breakfast...She also has been using the toilet this whole week which is a first since the stroke. We've only had one accident this week! I'm sure we'll still have bad days but it's so good to see her get some fight back even though I still haven't figured out what has caused this turnaround. I really doubt the Paxil could be working this fast and I tend to think she just decided she didn't want to lay in that room and turn to dust. Whatever the reason I'm very happy for it...Or maybe it's like my Dad's old favorite saying "It's always the darkest before the dawn"...

[kristina38]

Becky, I forgot to add I've fired four doctors so far since Mom got home for similiar antics as what you described, her neurologist failed to notify us they had rescheduled the appointment and we went through all that trouble to show up for it. Mom of course started crying in the waiting room and it was just an awful scene. I felt so sorry for Mom having put forth all that effort to get up, get ready, get in her chair, endure the bus ride there only to be told "it's been rescheduled"...They wouldn't even let us use the office phone to call the transport company to come back and get us...They then had the nerve to ask when I'd like to reschedule lol...You're fired was the answer they got...So far I've fired her family doctor, her primary care doctor, her neurologist and her wound care surgeon is on his way out after the amputation suggestion...I think the case worker from home health care called him and chewed him out because the next time I saw him his whole story changed and he commented how great the wounds were healing lol...Either that or he got word I was asking around for referrals lol...Don't be afraid to doctor shop, not all doctors are good doctors...

Kristina

[Kj mcmeekin]

Hi Kristina:

 

I'm glad to hear that you have fired doctors! I only fired one - a psychiatrist when Chris was in the hospital. He was a real jerk and no way was I putting up with his attitiude.

 

You mentioned that your mother is on antibotics for an infection. Chris had a bladder infection one time and his mental status had completely changed. He was taken to the ER, we thought he had another stroke - but his mental status and personality change was from the infection. Once the antibotic started working he returned to his normal self.

 

I'm glad to hear that things are going better............your going to have good and bad days.

 

Take Care.................

 

Kim

[kristina38]

Interesting Kim, Mom's infection is of the bladder as well I believe, so that could be it...She's been pretty tired all weekend now but she's still eating great and not being too cranky, she also seems to have slowed down on the waking me up all night long and early in the morning even though I know she's up on and off all night because I hear her tv over the baby monitor. She's been on the antibiotics now for four days and it's a ten day dosage so hopefully she'll be feeling a little better in the next few days. Her crying also seems to be slowing down some and for the most part if I pretend I'm going to tickle her belly she stops lol...I told her crying means tickles because I'd rather hear her giggle than cry...As for the doctors, they're overrated from what I've seen. Lately it seems I suggest a new course of action, they agree and the insurance company pays THEM lol...Seems like someone should pay me

Kristina

[Kj mcmeekin]

Hi Kristina:

 

We have a joke in our family, they call me - Kim AMD (almost a medical doctor)

I am much like you - I challenge doctors, nurses - whomever. I am constantly reading or on the internet searching for information.

 

I look at it this way - he's my husband - you don't live with him and see what I see.

Many times my "attitude" has saved us alot of problems with professionals and has saved my husband from alot of sufferring.

 

Take Care...................

 

Kim

 

 

[kristina38]

LOL Kim, yep, I feel like I'm about 8 people in one. I monitor her meds, her nutrition, her vitals, her wound care, her therapies, her doctor appts. right down to her BM's. If anyone knows what's helping and what's not it's ME. Mom is really doing much better this whole week again. We are still having BM's in the bedside commode and have just had one "accident" in two weeks now. Her transfers are becoming much easier as well and I'd say in the past week she's progressed from max assist to mod assist which is great news for my back! Her attitude is much better although she still has crying issues at times but I know now it's just something we all have to deal with and it's lasting for shorter periods of time now. We are also blessed with a great group of therapists from our home health provider that really seem to go above and beyond to see to it Mom comes through. The bottom line is nobody knows the people we care for better than we do.

Kristina

[swilkinson]

Kristina

Your news is certainly getting better. Looking back at the first weeks Ray was home in 1999 I was completely overwhelmed but then I did have my Mum (dementia) and Dad ( last months of cancer) here too.

But even if it had been only Ray I think I would still have been overwhelmed. It is the magnitude of the job. I read your list and you forgot a few: Social secretary, answering all those calls starting:"how is she today". Engineer: doing all those little jobs around the house which seems to fall apart as soon as you have something else on your mind. Purchasing officer: bath stool, extra pillows, medical supplies, all the stuff needed now you have an invalid in the house. Cleaner: how did they all make so much mess. Not to mention the extra cleaning that comes with the incontinence.

Whatever you are doing as a carer, it seems to be working so congratulations.

If I had longer arms I'd give you a hug myself.

Sue.

[kristina38]

LOL Sue thanks for the hugs I can't imagine having three people to tend to, my hat's off to you. I have enough trouble with Mom and her brother even though he's self sufficient enough to cook for himself twice a day and run small errands he makes a LARGE mess in the process lol...I know I sweep the kitchen floor once a day and it needs mopped every other at a minimum. Mom's getting better to the point her OT has her washing up in the sink but that created a new problem, she is sharing the main bathroom with her brother now and he's a slob. I've been boycotting cleaning that bathroom since we moved here but now I had to scrub it today as she was quite upset that the sink was not up to par lol...If only I was an octopus!

Kristina

[pprovost]

Hi Kristina,

Your post has made me remember all the anger I was feeling after my stroke. I cannot deny that there was humungous anger but I didn't let it out. Instead, I opted for a series of mini melt-downs afterwhich I felt worse because I had not banished the pain. My husband really helped neutralize all this repressed anger. He just flooded me with unconditional love. I still cannot believe how he could love that thing that he was married to. My Mom and sister bore the brunt of my anger and they never abandoned me. Family is so important even when we resent their luck to have not had a stroke . i soon realized that they did not choose to NOT have a stroke. I didn't choose to have a stroke either. *beep* happens as they say but never give up.

 

Pat

[kristina38]

Pat, I think the anger issues are the toughest to deal with on all sides...It seems everyone involved has anger and nowhere to direct it after a stroke. Mom's angry about having the stroke, I'm angry such a caring loving person as my Mom has to deal with having a stroke as well as my own life being in shambles as a result of having to move here and take care of her. I'm so thankful I found this site to vent some of my frustrations and anger rather than having it all bottled up or venting it towards my Mom. I won't say life is great now, but it sure is a hell of alot easier to deal with after talking to some of the people here and learning from their experiences. Since finding this site I've learned to handle situations differently and look at things from Mom's point of view...It's really helped Mom and I both.

Kristina

[kristina38]

Hi all, I haven't updated this thread in awhile so I thought I should let you all know Mom is doing fantastic! She just finished up eight weeks of outpatient rehab and her speech therapist has decided to continue with her for another four weeks. She is walking 50 feet with a walker and assistance. It's been a long hard road with many tears along the way but things are getting better. Oh yeah, I forgot to mention the best part! I've started applying for jobs this week and think I have found a job that will accomodate my hectic schedule with Mom. I have my fingers crossed!!!! Thanks again for all your encouragment and kind words

Kristina

[fking]

Thanks Kristina, I'm glad she's doing good. Good luck on your job, I'm scheduled for interview tomorrow myself at the Exchange store on the Army base. Still waiting on Wal-mart to call me too this week.

 

50 feet with a walker, that's great. My walking was so poor with a hemi-walker, until they would push the wheelchair right behind me. I think they just didn't want to pick me up off the floor. :scooter: Now I enjoy my scooter for long distances.