The hits just keep coming


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I know in light of all I've been through this should seem small in comparison but to me it feels like the proverbial straw right now. I've been working crazy hours as has my fiance in order to try and save money to make our trip home to St. Louis this month. I arrived home from work at 1:00 am Wednesday to find my Mother terribly upset and pointing at my 6 year old cat that I love like a child. He was making a funny croaking noise instead of his usual robust meow and he appeared to be dazed or drunk. My first thought was he was chewing on our house plants but upon extensive research his symptoms could not be explained by that. I took him to the vet yesterday and 350 dollars later (there goes my trip) we still don't have answers but a stroke is a possibility and even probable. Mom is very down and sad and I can't stop crying, I barely made it through my shift at work yesterday and still have to work again tonight. I also found out yesterday that it appears we will have to go to trial on our lawsuit as today is the deadline for the hospital to answer our settlement request then we go to pre trial which in all probability will end up eating anything mom might recover in the suit. "Devestated" is the only term that I can think to describe myself right now and I no longer even care to eat. I barely slept last night for the worrying and crying. I had finally found a lady that I trust and like to sit with Mom for the four day trip we were taking for only 300 dollars and it appeared finally something GOOD was going to happen for me and now this...I guess I just needed to get this off my chest to people I know understand. Thanks for listening to my pity party...

Kristina

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Kristina,

 

We always ask ourselves, why?, and we know not, just the same, we still say all things happen for a reason beyond our control and understandings.

 

I'm still shaking my head on some issues and asking why me? Only my faith and beliefs are getting me pass the point of no return.

 

I'm listening to you, evaluating myself, and trying to be stronger than usual to deal with the outcome. It's very hard to do. My heart and prayers go out to you and your mom.

 

I can imagine your feelings based on my own experiences right now. It's hard to hold inside and better to get it out as you have. You are right, the hits just keep on coming.

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Thanks Fred, I'm sure as like everything else life has thrown my way, I'll get past this horrible time. Somedays it just seems like it will never end though. I try to stay upbeat and be positive but DAMN life seems to want to make it hard to do. I still try to keep hope alive and my Dad always told me before he passed away "it is always darkest before the dawn" so maybe the light at the end of the tunnel will shine on me soon, I can only hope and pray...Again thanks for your kind words, they mean much to me

Kristina

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Dear Kristina,

 

Somebody once said 'what doesn't kill us makes us stronger'. Well, sometimes I wonder just how strong am I supposed to be? I'm sure you wonder that same thing! None of us really WANT to be Superman or Superwoman, do we?

 

Our pets become like family and when they hurt we hurt just as much - it's so hard when they can't tell us where it hurts, of course many, many stroke survivors can't tell us either. I for one have asked the Great Comforter to comfort you in a special way as you have had to make yet another detour in your path. I've had to adopt the philosophy that had I continued on the course I was taking something more devastating may have occured. Whether that's right or wrong, I try to be thankful for being spared another tragedy.

 

With the right legal team, the hospital may be required to pay all court costs associated with a suit filed against them should you win. Let's pray for your team that this will be reality. The unfortunate thing is that the hospital must feel they could prove their case by taking the court route. It would be nice to see the "little guy" take on the giant and come out victorious on the other side.

 

Take care, and even though it looks bleak today, the sun really will shine again in your life.

 

Warmly,

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LOL Anne, that was another of Dad's favorite quotes, guess he really was preparing me for my life...Our whole household is animal lovers. My Mother used to trap the feral cats and have them spayed/neutered and re-release them. She feeds everything from birds to turtles and I'm the same way, I never met a stray I could turn away LOL We're the types that can cry watching Animal Cops. My cat greeted me with his usual hello when I came home tonight but he didn't walk to the door to meet me. He did get up and follow me to the kitchen so he seems to be a little better. I also think I got a slight response from his left eye today. He's left side affected and seems to "forget" his left legs are there and lets them slide out from under him. He can walk well though which is really strange. I think maybe it's numbness. We'll be getting his bloodwork back Monday and he has another vet appt then. Have my fingers crossed it's nothing life threatening. Thanks for the comforting words I really appreciate it. I feel a little better this evening although I'm pretty worn out from work tonight, actually it might be the four days in a row working LOL I'd better get to bed, thanks again

Kristina

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:(:( Sorry about your kitty and your trip,sometimes things come in threes maybe yours is over and your due something great to happen,will hope so.Did you talk to the vet,see if he will take less sometimes they will.Not too long after my stroke I was home alone and my pretty white lab CoCo was outside all of a sudden she fell hitting the slidding glass door.I got to her and her eyes were flickering quickly back and forth,she was around 75 pounds,I have one good hand,I could not move her,so I sat down put her head on my lap and stroked her head,she went to sleep I got the phen couldn't reach my husband or boys anywher of corse.Hours passed,Coco tried to walk,wobbled from side to side and fell down,I was frantic,normally I'd have tried to get her up and in the car to the vet.Finally my husband came home took her to the vet,she did indeed have a stroke and had to be put down.Me then the dog it was too much.I cried for days,but I was so glad I'd set down and pet her the time I did,she never came back home.I now have a silly little beagle (Carly) shes with me 24 7. I do hope things go better for you and you get to take that trip.Take care best wishes.Laree Martz
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Update: Today Wody the cat is feeling his old self again! He seemed somewhat better yesterday and today when I play with his left feet he jerks them away (he doesn't like his feet played with but because of whatever was wrong with him he couldn't feel them for the past three days). He jumped in bed this morning and did his usual purr til he drools routine then went to the kitchen to wail his disapproval of the empty food bowl lol...We are still going to the vet tomorrow for follow up and get his bloodwork results but he seems normal again. I have also booked my trip even though money is very tight I know I need to take this getaway after a full year of 24/7 caregiving. Thank you all for your concern and warm wishes it really means alot to me!

Kristina

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Thanks guys, I took Wody to the vet today for his follow up and his bloodwork all came back negative for leukemia, diabetes, feline aids etc. so that is a good thing. We still have no idea what happened to him to cause this however after 350 dollars worth of tests. We're continuing to monitor his progress and he's on a two week course of antibiotics still. Luckily my place of employment has hired a couple new people so my schedule is very light this week and I have to time to catch up on the mess my house has become with all the tragedy and trauma LOL...Which reminds me, I need to call Mom's doctor and get her bloodwork results back sigh...I need a personal assistant lol...

Kristina

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Kristina,

My wife and I have two Beagles. We call them "The Babies". We have not kids at home. One of my biggest problems is my memory or should I say lack of one. One thing I do remember though is the welcome home that The Babies gave to me when I came home from the hospital. I don't know what I would do if I didn't have them around right right now. In fact at this moment Rosco is asleep under the desk with his head on my foot and no matter where I go today they will fallow me. With our pets we always have a friend and ardent supporter close by. The loss of a pet is no small matter. I am religious so I hope you don't mind if I say I will pray for you and your family. You deserve to get a break.

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Our pets are like family as well and sometimes we don't realize how important they are in our lives. We have two cats and a Greyhound that imo have been very therapeutic in Mom's stroke recovery. Even when Mom first came home and could no next to nothing (not even use the toilet) she still loved when Wody got in the bed with her and she would pet him and let him lay on her chest. We got the Greyhound a couple months after she came home from the hospital and she loves to spoil him, her whole face lights up when he comes in her room. I'm happy to report that Wody is still seems to be doing well and hasn't had any backslides.

Kristina

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Ray is seven years past his major strokes, two in April and May 1999 and over a year past his last stroke in May 2005. We have just finished a three month session of OT, PT and speech and swallowing exercises. Plus six weeks in February/March of weekly meetings held by the Community Stroke Assessment Service. This was helpful but time comsuming as well as being 45 minutes from home.

 

Because of his other issues, primarily diabetes, he has some new problems, increasing frequency of urinary incontinence being one of them.

 

This morning we had a visit from a community nurse to assess his incontinence, this is in response to the 48 hour flow chart, doctor's visit etc that we have already done. She wanted to take another urine sample but Ray froze up. So we will have another visit from another nurse later in the week. I am afraid this "jumping through hoops" in order to get the medical services Ray require is really starting to get to me again. Even though we are so far down the track a lot of my time still is taken up by setting up appointments for Ray and taking him to them, going to our local doctor, the pharmacy and other places he needs to go. Alternately where health professionals come out to us we are not giving a time but they will come in the morning or in the afternoon so we can wait in most of the day for them.

 

How much time do you as a caregiver spend on medical appointments etc? How much of your financial resources get used up in this process? Is there anyway we can get some information that will allow us to stream line the process?

 

I realise the answers from USA or Britain will not necessarily help me in Australia but it may help someone else who reads this post.

 

Sue.

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Sue,

I am not sure if I am giving the type of answer you are looking for, because very little I will say here will help any new caregivers except possibly know what to look forward to :)

 

I have to call in prescriptions every two weeks. I spend at least 10 minutes on the phone (even though it is all automated), and another 1/2 hour or more trying to track down the doctor's office to find out why the script has to be approved...again. Another 15 minutes to pick it up later that week.

 

I spend an average of 1hr 20 minutes per day, 3 days a week on OT or Speech, and over 2 hours on the 4th day for both. They can't seem to be able to schedule OT and speech on the same day except for once a week.

 

We spend 30-60 minutes every four weeks for blood tests/labs. We go to a doctor every four weeks or so as well. Who knows how much time lost there.

 

Then there is the time spent doing speech homework and therapy exercises. I have been lucky that I have had others help Patrick with these in addition to my help.

 

I very rarely have a day off from both work and therapy/doctor/tests etc. There is always some "have to" on my days off from work. I squeeze in "me" time where ever I can. It's hard because I know Patrick needs time with me to just be a couple, not with me doing a "task".

 

Kristen

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Don sees his heart doctor and urologist twice a year, his internist, dentist and foot doctor four times a year and goes to speech classes 9 months a year, twice a week. Plus he goes to the lab for INR tests monthly. Then there is the twice a year CAT scan at the hospital and once a year colon test. These are all appointments based on nothing being wrong with him. I can't tell you how many times a year we go to the hearing center when something is wrong with his digital aids, but I'm guessing it's 6 times a year. Then there is the time spent on line ordering prescriptions refills on 7 of his prescriptions and going to the drug store for his other 2 that can't be done on line.

 

How much time is spent running around doing all the above and doing at home therapies for speech, etc. I don't even want to know. But doing all this for our mates is what makes us caregivers. It's too bad the govenment doesn't recognize the value in at home caregivers and how much money we save the system when our mates are kept out of the nursing homes.

 

Jean

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Boy, you are busy - I am a 20 yr. survivor, and yes we spend alot of time going to dictors -

I'd check with Medicare and your medical insurance to see how you can get them to pay more

GOOD LUCK, God Bless

June, yes, its an erending battle that you'll both beat, cause he has YOU, the caregiver

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Hi everyone i have explained my story before but sadly i have more to add. I wanted to mix together my two posts because only one personresponded to my other one. My papa (grandpa) had a large ischemic stroke on the left side of his brain. He was hospitalized may 10th. That morning my granny heard a noice and went to his bed room to find him on the floor trying to get himself up. He could not talk nor had any strength to pull himself off the floor. He was taken to the hospital around 4 that morning. After he was sent to the ICU he was given oxygen but that was slowly not working. They ended up intibating him that day because he could not breath. The doctors told us that he was in bad shape and that things werent looking good for him because the stroke was so large. After a while they started to slowly take him of the vent. He was then given a trach. He started do well on this and they were able to take the trach out. He was not able to eat and was given a peg tube to feed him through his stomach. Also the first day his kindeys started to fail so they put him on new medication that helped alot and ended up getting them back to normal shortly.

While my papa was at the hospital we seen signs of communication. We had very negative medical staff that said it was nothing puposeful. However, we did not beleive them. When people entered the room he would stick out his hand and reach for theirs. he would wink at us quickly. Occasionally he smiled at funny things my family did or said. He always was checking out his room, he would close his left eye to see how good his right eye was doing. (he was paralyzed on the right side) one night he even started tapping his foot to the music we were playing for him. He would sometimes wake up if we mentioned his dog. Sometimes we could get a sort of "no" or "yes" out of him. All of this was purposeful for us, he was fighting and so were we.

Next came when he couldnt stay there because he couldnt participate in 3 hours of therapy. He had to be taken to a nursing home that was only 45 minutes of therapy a day. The day befor he left he was given a test by the speech therapist. He was to eat a small bite of chocoalet pudding to see if it was going down the right way and not into his lungs. During this he fed himself three times and the speech therapist seemed to think it was going to right way. His hospital stay was three weeks long.

They next day he was transfered to a nursing home. Were he was not watched and he needed not to be. He fell out of his bed twice was never x-rayed and was having a horrible time breathing. After the second day we took him back to the hospital. (yesterday) where we have found he has had a heart attack and his kindeys arent doing good again. My papa had gotten extremely better he went to a different hospital called specialty select and they slowly weaned him off the vent they put the trach back in for three weeks. He was very sleepy most of these weeks because of medication they had him on. We asked for this medication to be stopped because he was not getting and physical therapy. Once they stopped the medication he started talking (Trying to talk) we usually dont know what he is saying. His facial movement seem to get better all the time, smiling puckering lips, opening his mouth and even mouthing words to his favorite songs. However they were moving him to a nursing home bcause he was not doing three hours of physical therapy. On the 14th of july they had done a bronch that said tehre was no blockaged and is O2 saturation was 98%. Then 4 days later he went into respitory distress and was back in the ICU and on the vent. Dr said he breaths well and the problem may be weakness with throat and vocal cords... he may have to have the trach permenately. We are praying that his throat muscles will get stronger and the trach wont be permanent. All in all my question is has anyone had experience like this? please let me know if you have

 

I am so sorry this is long... if you do have time please read and let me know if you have any advice or encouragment

 

 

one more thing... he also has had to have a restraint on because he pulls on every tube in hisbody. he pulls the peg tube out, IV's and his trach. has anyone else had experiences like this. its very difficult because he hates the restraint but when he gets aggitated he pulls on things he shouldnt be.

 

 

thanks for your help :big_grin:

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Hi Mylee

 

I didn't reply on any of your posts because I haven't experienced what you are going through right now. I can sense your distress in what you say and can say: find your inner peace. That is what we all have to do as we see our loved ones stretched out on hospital beds. You are part of his support team and cheer squad and that is what he needs from you right now.

 

As a voluntary hospital chaplain I saw a lot of people go through what your family is going through - the hopes and fears, the relief as a loved on got better, the despair as they went back into intensive care again. Just be there. The medical staff will do what they can, to heal, to comfort, to treat him as a dignified person would want to be treated.

 

There is not a lot you can do. If you are a praying person pray for peace of mind for both of you, for your love to be strong, for the ability to support those who are weaker than you are.

 

Learn what you can about each procedure and live on in hope. A lot of stroke survivors fight a battle measured in inches and days go by before the next improvement.

 

Above all hang in there.

 

Sue.

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Good Morning to you!

 

My husband is the stroke survivor. In October 2004 he had a bleed in his brain that led to swelling. For a week he was in ICU not knowing anybody other than me. When I looked at him his eyes were empty. He too had to be restrained because he pulled any tube that was inserted out...It was a dark time, indeed. The good thing is that the doctors said he wouldn't remember anything of that time and he doesn't. He did go on to have yet another stroke in March 2005 that resulted in further damage.

 

One of the deficits your grandpa may be experiencing is a thing commonly referred to as "vision field cut". This means he has no peripheral vision on one side. He probably can't understand it and keeps expecting the vision to return.

 

We who are here have learned to live one day at a time. None of us can do anything about yesterday and we aren't promised tomorrow. I read somewhere that's why today is called a present. As Sue said the road back from stroke is extremely slow.

 

It would be great if we could make promises and guarantees, but we aren't professionals, we aren't there and we just can't. We can offer our support, love and prayers to you and your family though and we sure do all of that we can!

 

My husband recently was denied inatient therapy because in the medical community's eyes he has neither the stamina or ability to benefit from an intensive therapy setting. In his case his short-term memory is so damaged that he isn't able to remember directions long enough to develop the skills needed to benefit from an intensive inpatient therapy. It is hard to hear the words "profoundly and severely impaired", but we have to deal in reality too.

 

It sounds as though you all are asking lots of questions and he is receiving good care at the hospital. As far as nursing homes go - none of us like them. Period. My recommendation is that if he goes to a nursing home again someone in the family should make frequent visits and at different times during the day. In this way the caregivers will get to know faces and realize you are going to be watching him for any signs of neglect or abuse. I'd also recommend alot of investigation of facilities before he is released again and if you find one you particularly like recommend it to the social worker. If you make a call to the nursing home, then be sure it is on the list to which social worker forwards your grandpa's information, maybe he will go to the facility you've requested. These are things I did before my husband went to a nursing home this past February.

 

Warmly,

 

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.

 

Hi Papa69,

 

I have no experience with trachs either. But I can identify with the part of your post about your papa being moved out of rehab because he couldn't keep up with the therapy schedule. After my husband's stroke we were told he would be a vegetable for the rest of his life and that he couldn't keep up either, so he was moved to a sub-acute nursing home. As hard as it was at the time, in hindsight I know they were right about him being too ill to keep up with the rehab schedule. He needed to gain some strenght. He was in sub-acute a month, got stronger, and was able to go back to rehab where he stayed a month more before getting discharged and then he did out-patient therapies for another five months after that.

 

Don't give up hope because this seems like a step down. It doesn't have to stay that way. Find out what would have to change for your papa to go back to rehab and make all your visits purposeful visits to help give him extra stimulation or whatever to work towards that end.

 

And by the way, the doctors were completely wrong about the 'vegetable for life' prognosis.

 

Jean :friends:

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Hi papa, I too hadn't replied to your other post, simply because I didn't have any experience with the things you were asking, I did reply this am, to Welcome you to the site.

There are many survivors or caregivers of survivors that have made much more progress than Dr's or medical personnel every gave hope for. Your papa may have to regain some strength, overcome some of the illness/heartattck in order to get strenghth to work on more recovery. As others have said also some of the drugs may make him tired or sleepy. That might not be bd right now to keep him from puling his tubes out.

Know you are not alone and our thoughts and understanding are here with you and your family.

 

I think at this point, to be there showing love and encouragement is the best thing. Talk with the family and have one person be an advocate to the Dr's and medical staff. Don't be afraid to ask questions, and if you don't understand say so.. Some Dr's sometimes lose sight and get very "clinical" I think in a way they have to develop a little tough skin or they would go bonkers.. grieving for evey patient and trying to 2nd guess themselves ( I was a medical assistant). Some Dr's seem tough and cold, and some very clinical and to the point. But remember if you don't like the Dr. it is your right to request another.

 

Don't give up hope, as long as your papa is trying there is hope.

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Hi Papa68,

 

I just wanted to welcome you to the site and let you know that you and your family are in my prayers. I am caregiver to my fiance who was in hospitals, long term acute care facility, and rehab and now in outpatient rehab for the last 10 months. He was so sick at the time of his strokes that he was in the ICU for nearly two months and he was on a trach nearly the whole time and left the hospital with it. He then went to a long term facility and they weaned him off the vent and trach in about six weeks and he has never had to have it placed back in. As so many others on this site we were given a very, very grim prognosis, and I can tell you our lives are no where near what it was but they are definitely not as grim as the doctors thought they would be. It has been a long road to recovery but he has made so much progress. You can read all of my posts if you want, just click on my user name to the left and it should bring up an area where you can read all the things I've posted to and you could read our whole long story, but its probably worth the read because he has really done well and 10 months ago we were facing the same things that you and your family are. Mike spent the first couple of months not doing anything purposeful according to the doctors but he now talks, feeds himself normal food, walks with a special walker, and is very aware of his surroundings which the doctors said they didn't think he would ever be aware of what was going on around him or if he would even recognize myself or his family.

 

So try to hang in there the best you can and be there for your Papa. Like others have said we can't make any promises because with brain injury there are no definites, no definite time lines and no one knows how things are going to turn out but there are definitely alot of people on this site who have beat the odds.

 

Good Luck you're in my thoughts,

 

Tina

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Hello Papa68:

 

I had simular experiences with my wife while in ICU. We were told after the 2nd attempt to remove trac failed she would never breathe again on her own. After 30+ days in ICU they moved her to inpatient rehab with trac and all. While there they made 2 attemts to remove the trac that failed. In her final week they tried 1 last time and she was able to breathe on her own. I learned alot from all of the attempts they made. Never take what any Dr tells you as fact because when it comes to Strokes they are just guessing. The same happened with the swallow tests. After failing those so often we were told she would never eat solid food. 4 Months later she proved them wrong again. So no matter what your told there is always hope. It just takes longer for some to get off the respirator than others.

 

Good Luck and hang in there. This is a long road with many surprises.

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I learned from a great therapist and doctor last week while undergoing an eval that what the doctors tell you is fact and in part a guess in your case. See, what they say is derived from another case, not your case. Your case is yet to be determined.

 

Like cancer, everybody that gets it doesn't die from it when it's diagnosed, caught, treated and removed in due time. When a doctor say you can die from cancer, that's a fact and a guess in your case until all remedies has failed.

 

So with stroke conditions and individuals, nothing is certain until all avenues has been exausted, otherwise recovery is always a possibility, not just because the last person treated didn't make it. That statement doesn't hold water. Possibilities for cures and recovery are never ending no matter the odds.

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Guest braz54

I just wanted to add something postive today.

 

Joe finally asked to get behind the wheel of the car. He walked out (limping) and said I want to try, I said Good for it. He got in the car and said come on. I was alittle scared, but proceeded into the passagenr\

seat. That felt good seeing I have't sat there for 11months.

 

Joe backed up and down the driveway and back out into the street and backed into the driveway and then to the back door. I had tears, He looked so happy.

Today he also has been walking without the aid of the quad cane and he actually got up with his throw aways from lunch in his good hand and throw them away. That is a big thing. That is the first time.

 

Well Today was A GREAT DAY!

 

Thanks for reading

Gail

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GOOD FOR JOE! 6 MONTHS AFTER MY STROKE, I ASKED THE DOCTOR WHEN I COULD DRIVE AGAIN. THAT WAS 2 YEARS AGO. I'VE DRIVEN TO FLORIDA TWICE, SOUTH CAROLINA ONCE, AND ALL OVER THIS AREA. I'M STILL WAITING FOR THE DOCTOR TO TELL ME IT'S OK.

 

CONCENTRATION. THE NEW KEY WORD WHEN DRIVING. AT FIRST MY RESPONSES WERE A LITTLE SLOW AND I FOUND THAT IF I DIDN'T PAY ATTENTION, I WOULD DRIFT LIKE A DRUNKEN SAILOR. I PROMISED MY WIFE I WOULDN'T SCARE HER TO THE POINT WHERE HER HAIR WOULD TURN WHITE. WHY RUIN A GOOD DYE JOB?

 

HE WILL CONTINUE TO IMPROVE AND WILL UNDER TAKE MORE CHORES. EVERYDAY IS REALLY A NEW CHALLENGE AND VERY REWARDING.

 

CONGRATULATIONS

 

MARTY :Clap-Hands:

 

 

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Dad had a stroke a year ago May. Praise God for the nurses/speechtherapist/aides at the nursing home.

They pushed Dad's doctor to relent to get him to try eating blended foods.

NOW HE'S EATING 3 MEALS A DAY!

YESTERDAY HE ATE 2 BOWLS OF OATMEAL FOR BREAKFAST!

He's been taken off the feeding pump - although he's still getting tube feedings, they've reduced the amount, and he's gained 4 pounds! :cheer:

Not quite as helpless as I used to be.

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