about 3 years ago

When mom had her stroke the doc told me she would not live but a few hours but she made it. She could not talk for couple weeks an then that came back . I fed her thickened foods for i think a month then the speech therapy stated working with mom an she got to where she could eat anything the first year an the second year . I to think some meds effect their eating. If they are sedated it will effect them. Mom on the third year i started feeding her thickened liquids again as she was getting worse again. i fed her ground up food the rest of the time she was alive. They wanted to put a feeding tube in her an she didn't want it. Mom eat all her meals everyday. I dont think it was good for her tho. But i did what she wanted. Mom got better with her stroke after she first had it. The first two years. The last two years she got worse. I think she gave up some.I had to tell her of my dad passing away an i think she gave up after that. But i think stroke victims are all different. I think a lot of them do good after the first strike of the stroke they get better in time. Some people never get better. Mom could talk an eat an i thanked God for that cause i could see some stroke residents just laying an could not talk or eat they had a feeding tube.My mother died a few months ago. I thank god for the time i had her. I wish you well an hope everything goes good for you. God Bless you fr wayne.

about 3 years ago
devinsnana said...

Thank you Carl an Christine 1939 for your response, I am not a believer in feeding tubes under most circumstance early on probably necessary but not as a life long solution. I am glad to hear that people do begin to recover after a period of time and it surely does have allot to do with how the person feels. It is scary to some degree because you just don't know how scrambled the brain is. You make a good point about sedation and how it could effect a situation, on the other hand sedation early on is probably necessary. How long was your Mom in the hospital and was she then transferred to a rehab?

Andie

about 3 years ago

My mother was in the hospital for 10 days an then they told us we had a to take her to a nursing home. Which was a struggle from the beginning. But she started doing better the first few months but she never would be able to use her arm an leg again. But i stayed with mom everyday. Some people get better an most stroke victims don't . But mom could talk an eat so she did better than others. I helped her an made sure she was took care of . That was a struggle in its self. Mom s mind was good but the stroke did effect her. Mom was as smart as ever she could read everybody. She was sharp she knowed who was good to her an who was not. An she would tell me to .This is a picture of my mother you can see how good she done. I just loved my mother an i had to help her an be with her that helped her more than anything knowing i was with her. Its very hard to see them struggle. An cant help themself. Mom would use her good arm an she could feed herself the first two years the last two years i had to feed her meals to her when she gotten worse. Mom is not suffering now tho. They just need to be kept dry an clean an turned every two hours an gotten up as much as possible i would take mom to the bath room. They can take them. If their mind is good an they know they want to go. They should treat them with dignity, I would rather go than use it on my self wouldnt you. Its a hard thing to go thru. I hope you get good support an things go good.The therapy dept were I was at were my friends an they helped my mom I loved them more than anything. So i could not every forget them but them only. May the lord be with you. Fr Wayne

about 3 years ago
Gary's Daughter said...

Hi Andie,

Sorry to hear about your brother-in-law. My father had a massive stroke 11-15-2008. We were told he was not a candidate for the drug that a lot of stroke victims receive as it would have "turned his brain into mush" (even more than the stroke already had). Convinced it was temporary & if I didn't do it he would die...I agreed to a trachea & jpeg feeding tube. Dad was completely paralyzed on the right side, had dysphagia & global aphasia & the first week sedated. Two months later, Dr's prognosis when pressed for some kind of answer, "I don't expect your father to recover much if any." I remember thinking Oh my God...What have I done??? (for agreeing to the trachea & feeding tube). So I decided I didn't care what the Dr said, we were going to shoot for the stars. Dad didn't qualify for the therapy floor that a lot of stroke patients receive, because he was worse off than they would take...Now don't you think it should be these people receiving more to get to a better point? But that's a whole other chapter. I believe that in part his stubborness & visits/encouragement from family & friends is what has helped him. He was called Houdini in the hospital, restrained to the bed & still trying to "escape" ending up on the floor several times. Fast Forward...after 40 HBOT treatments (hyper baric oxygen treatments), lots of visits from family/friends & pulling his trache out 6x which the smart ENT ER doctor said, "he's breathing fine, leave it out." My father is walking, will sometimes use his right hand (still work in progress), can say yes, no, ok, "Oh my God", "I don't know". He does speak but it comes out garbled...he'll stop...and laugh because I am sure he's thinking what did I just say? I had to really push & got my wish to have his feeding tube removed. He has graduated from pureed food to mechanically softened & from honey thickened liquids to nectar thickened. He is still in a rehab/nursing home...whose front line staff has treated him with respect and looks at what he CAN do and not what he CANNOT DO. That is so important to focus on the CAN's and Possibilities. Another important item, from the very beginning I have insisted on Zoloft after reading how depression is so pervasive with strokes. Without my knowledge his dosage was lowered recently, the negative effects included him sleeping at least 20 hrs a day, not getting out of bed, being really crabby & not cooperating. I was going out of my mind, seeing him slip backwards. He ended up with a bladder infection from lying in bed so much and could barely walk. When figured out, the dosage put back to where it should be and 2 months later he's finally walking almost as well as he did before. Glad he has such kind doctor who helped figure this out. She did not lower the dosage, it was one of those visiting Psych Consult places (which are not allowed to see him any longer after I found this out) I pray your brother-in-law has a good recovery & strength to those around him. When someone experiences a life dehabilitating illness, it not only affects them but the lives of those close to them. God Bless

about 3 years ago
devinsnana said...

Thank you so much Gary's Daughter, your information is very informative and encouraging, I am passing it on to family, the sad thing is they are limiting his visitor's because prior to ever having a stroke he stated he never wanted anyone to see him in the condition he is now in. This is so sad because I feel the more people who come to see him the better.

about 3 years ago
Gary's Daughter said...

Wow, I certainly can understand both sides of this. I have to share that when my father's high school buddies (the ones that he played, football, baseball & basketball with) came to visit in the hospital, he really gave a positive response. Recognized them, was sooo happy to see them. They shared stories about the good old days in high school, special moments while playing sports & he did really seem to remember. The more recent stuff seemed to be a blur while still in the hospital. I sometimes felt he didn't really know who I was, but absolutely recognized them. They still visit about once every month or so and I am sure there are times where he is "unpresentable", maybe not dressed, hair a mess or whatever, but when I specifically by name ask if they came to visits, his smiles are big & nods his head yes. Of course the first 6 months when he would cough...the "stuff" would come flying out of his trachea...really kinda gross, but that did not define him as a person, people would just have to move out of the way. And there were times when he decided to take the nature boy route (naked)...but I feel overall it was/is worth it for him to see whomever came to visit.

Tip...While in the hospital and first nursing home, we kept a notebook next to Dad and asked all visitors to log their visit. Even close family, what they talked with him about, how he seemed to be doing, etc...very touching, a good way to see how he was progressing & know what's going on.

about 3 years ago
grannylove2 said...

Dear Gary's Daughter,

This is such a good tip. It's also good because you can't be there 24/7. Another good tip: keep a log of all interactions (with nurses, aides, housekeeping, other staff and visitors) and what they wanted/said. My mom has Alzheimer's and when she had to spend 3 months in a nursing home because of shattered heel and both bones in right arm broken, the staff was supposed to change Mom's diapers every two hours. We would call and let them know she had a "dirty" diaper and they would not come right down to change - could be up to 1 1/2 hours. I could understand a wet one but a dirty one? They would not even change them every two hours. We started marking them in places that weren't obvious and sometimes they weren't changed for up to 8 hours! We constantly brought it to administration's attention and were always promised that they would take care of the problem. NOT!!! She became so gaulded, she was bleeding. You know that had to hurt even thought she could not recognize the pain so much. Never so glad to get her out of there in my life! Won't every go back there again - FOR SURE!

about 3 years ago
Gary's Daughter said...

That is a great idea to keep a log/notebook of interactions with Doctors, nurses & staff! Looking back, wish I had done so. I am so sorry you & your mom experienced the indignity and neglect from that nursing home. Shame on them.

Another tip for anyone out there, if there is a chance recovery will take awhile...consult/hire an Elder Care Specialist Attorney. I envisioned my father coming home to live with me once he got to a certain point, however that has not happened as of yet and now I am in the miserable process of battling with medicaid...I have consulted for a second time with the same attorney. Should have hired him for the entire process. Hope to have it all resolved in the next week or two.

My father was in the hospital for a little over 2 months. They were pressuring me to take him home. Me...a single person working a job that required about 60 hrs wk. He could not walk, talk, had a trachea, feeding tube, was somewhat combative & wearing briefs/diapers. Not to mention he's 6'1" & at that time 235lbs (He is now 185). I asked, "Are you kidding me??? I have a great support system, plus I contacted an Elder Care Attorney, all coached me. This is what I said & still sometimes have to say, "I love my father but I am NOT legally responsible for him. You will have to find a good place for him to go." Of course I wanted the best possible place for him, so I spent hours researching/visiting rehab/nursing homes and picked one due to their immense therapy department. The place looked very nice, crystal chandeliers, a dining room (although he couldn't eat at that time) with grand piano, huge therapy area. Because that is what we wanted to focus on, PT, OT & Speech. The next 2 months were horrific. The therapy department focused on what dad's deficits were, instead of what he could do. Thus kept "dropping him" so he did not received therapy most of the time, it went around and around. For the family consultations, I'd be sitting in a room with very loud people explaining how cognitively impaired he was. I knew he had deficits, I barely could get a word in edgewise...I asked what could you say was a positive for him? Room fell silent...interesting...but my point is he did have one or two positive attributes (sense of humor & stubborness). Proof in point, he's walking and using his right hand sometimes, along with trying to speak. They were saying never and trying to bring me back to reality...I knew different. Their front line staff 90% was neglectful. I saw nurses sleeping at the desk at night, even 2 at a time. I was there unpaid, to stay the night at their insistence, to do what they are paid lots of money to do. We were pressured to hire someone 24-7 to sit with him. Helloooo, Do I look like Daddy Warbucks? And isn't that your job to take care of him while being paid thousands a month? He fell daily, broke his collarbone, which they didn't x-ray until I threw a fit and insisted (now has arthritis there). While spending the night before the x-ray results were back a young dumb girl comes in and is trying to role him over by pushing on his broken collarbone side shoulder...well, I do admit he was combative, grabbed her wrist and was going to hurt her. I totally understand why he was mad...Luckily I was there to intervene...didn't realize my fingers could be bent back so far without breaking. I suggested she speak to him prior to just pushing on him, tell him what she's going to do and turn him over using his legs like the other CNA's did. I was under so much stress at that point, I wish I would have reported them to medicaid, my brother said he would but didn't. Then I find the Medicaid website rating all these nursing homes...the one I chose was one star out of five stars. Enough said, to save his life (I truly believe he would have died had he stayed there) we (brother & I) hired a consulting firm (who helps intervene in these crisis of care situations). The nursing home wanted him out of their facility ASAP. Deep breath...We moved him to a hospital's psychiatric geriatric dept...I was that desperate...They loved my father, said he didn't belong there, but were happy to straighten out his medications...I tried to keep him there longer simply because I knew he was in good hands. They treated him with dignity and respect. He was safe. But, there I was again, after just 5 days, trying to find a rehab/nursing home for him...discovered places only have so many "beds" for men. No place on my list would take him (I was shooting for 4 & 5 star rated facilities now that I knew about that) because he had a trachea and feeding tube, plus being a man. Well the hospital did what they call a blast fax (because of insurance, he had to be discharged) to every nursing home near and far in MI to see who would take him. Only ONE responded, by the grace of God, he ended up in a place near where I use to work (25 miles one way from home) that wasn't real pretty like the other place but had people with heart & brains on their front line staff. It's not perfect, but they say they just love him, and it is apparent when I am there (5x wk) & at times even when they don't know I am watching.

about 3 years ago
GOOSE said...

My sister had a major cva on 04/5th. We are blessed because she was given TPA, and now has no phyisical paralysis. The problems we are seeing is that she has minimal muscle weakness on the right side. But the even bigger issue is her cognitive ability. She is slow in speech, ITS LIKE SHE CANNOT FIND THE WORDS, and her long term,medium term, and short term memory is confused and to some degree loss. The doctors tell us she had a bilateral infarction in the are where the brain stores memory. My sister is a vet. and is at the mercy of the VA hospital system, which I find to be challenging. I feel she needs and soon cognitive rehab. She should have had in patient rehab, but was discharged on the 14th. Please send your thoughts and advice.

about 3 years ago
devinsnana said...

Gary's Daughter I have personally seen exactly what you describe in Skilled Nursing Facilities and even in Assisted Living Facilities, basically to keep a long story short there is blatent NEGLECT going on in all of these institutions. I have often thought they should pass a law and video tape the whole inside of every facility on a 24/7 basis, this would certainly change the level of care given to the patients. After all we have this type of taping in most public places and many crimes have been stopped using this simple technology.

about 3 years ago
Gary's Daughter said...

I agree

about 3 years ago
Gary's Daughter said...

Goose,

Sorry to hear about your sister's stroke. I have heard it is very challenging working with VA hospitals. Good that your sister was given TPA. Where was she discharged to? Home? Rehab center? There are certain therapies good for certain things. Did the Dr specifically diagnose her cognitive issues? Share a prognosis? Is there a Social Worker from the VA that could assist? I would ask the Dr., "What can be done to help her improve her cognitive ability? What therapies, prescriptions, specific exercises?" Research the internet...I wasn't able to join any support groups with my Dad or as a caregiver, but that is something I believe would have been of immense help. Good Luck!

2 months ago
Concern aunt said...

Can anyone help me understand ? My nephew is 37 years old , he had a vessel on his brain burst they did surgery and stopped the bleeding,he has been in a coma now for three weeks , peg was put in and a trachea . He is not breathing on is own , he does moves his eyes or mouth at times is that him doing it or involuntary movements ? I can't get a straight answer from his wife !

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