kristina38

Panama City, Florida (Bay County) Northwest Florida

Therapy can be very tiring on survivors. Mom had several different bouts with it. We'd go for a couple months until she hit a "plateau" and wasn't improving enough for medicare to keep paying. We'd practice the stuff we learned in therapy for four or five months and when we saw improvement we'd call the doctor and sign up for more therapy. I found with Mom she did best if we limited it to a few months at a time then quit and let her process all that info. I think sometimes they forget the cognitive deficits that go along with the physical and try to cram too much info into someone which just creates exhaustion and confusion. Kristina

Dorrie, I know how hard it is to see your Mom hurting or sad, been there done that and it's very hard. Your Mom is still the same strong person on the inside, she maybe down and not feeling as confident as before but she is still that strong woman you know. My Mom suffered horribly after her stroke and spent the first 3 months basically in a coma or close to it and then several more months of acute rehab with horrendous decubitus wounds, pneumonia, mrsa etc. I was fearful she would never have the strength to recover at ALL. She proved everyone wrong and continued to improve and somehow a little over a year post stroke was doing PT that included walking 50 ft with a walker and assisstance! She never regained her speech nor her right arm but we had many fun times together in the last year of her life and she got to know my fiance, had a wonderful Birthday, Thanksgiving, Christmas and I will always be thankful for that. I know she didn't like being in a wheelchair and she got frustrated at times not being able to care for herself but I also know she had many happy times and so will you and your Mom if you can help her to not give up. What you can do, is tell her how much you love and care for her and remind her what a strong woman she STILL is and how much you need her in your life. I can't even tell you how many times Mom and I cried together after she came home and I was her caregiver 24/7. We had happy times and we had sad times and we had angry times but most importantly we had TIME. Kristina PS I lost my Dear Mother a little over a month ago to complications after a gallbladder surgery, she was a pillar of strength to the end and I am ever so grateful to have been blessed with the ability to care for her and have that extra time...

LOL Phyllis we usually pick out the best gifts for ourselves! I'm really trying to get into the spirit of the season but I just don't feel terribly motivated right now. My birthday is a week from today and I'll be 40 which isn't helping my mood any either LOL. My Mom was always big on Birthdays and Holidays and without her they just seem lackluster at best. Last year it was such a joyous occasion for us, Mom was improving steadily and even oversaw my decorating and menu choices. I made sure we had all the things she always had and my fiance built a beautiful fire in the fireplace for us to open our presents in front of. Mom really enjoyed it and I'm glad we could give her such a happy last Christmas. I'll probably put the tree up sometime this week but right now I'm procrastinating, knowing it's going to be hard emotionally for me to see all her favorite decorations and such. I will also try to do some charity work or at least make some donations in Mom's name for Christmas. Kristina

Hi Leslie, you are really dealing with alot right now. Is your husband on any kind of anti-depressants? They really are necessary for just about ALL stroke survivors from what I've found. I was hesitant about putting my Mom on them but after a few weeks of dealing with her horrible moods and vicious attitude I had to do something. We put her on Paxil and she was like a new person by the end of the first week. They were really a blessing for us. Good luck with the Doctors visit and be sure to let him know about ALL of your concerns and problems. It's important he know the severity of the situation and all that you have on your plate between your husband and your daughter. You always have a place to vent or cry on someones shoulder here! Kristina

Good Luck with your job Fred! Mom still uses her chair on a daily basis but she is practicing her walking. Considering I've been told everything from "unplug her life support" to "she'll never walk again" to " we should amputate her foot" I'm ecstatic with her progress even though she isn't always pleased LOL. Kristina

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

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

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

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

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

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

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"...

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

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...

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...

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...

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...

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...