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PT - so discouraged


jlight

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Well it's been a while since I've been on the site, hope all had a Merry Christmas. Ours was good, different but good. Everyone tells me that I should be so thankful for the progress Oliver has made, however, feel so discouraged lately. His physical therapist discharged him from PT this week. He said he couldn't continue to treat him without showing progress. Oliver is really down, the goal set for him when he started was that he would walk with a cane. He didn't meet that goal, so he thought he would continue PT until he could. It will be a year in a couple of week since the stroke. I know it's a slow recovery, but we thought sure he would be able to walk and eat by now. Now I'm not so sure he will ever. I get so mad at the world sometimes. Life sure seems to sucks. He still has the feeding tube, can't drink liquids, eat meats or anything other than pudding consistencies. He is walking with a walker, but still does not have balance. Feeling so depressed, sad and angry. Keep us in your prayers. Judy

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Judy:

 

just because Oliver is released from PT does not mean his recovery will stop. PT stopped because of insurance limits, but recovery never stops & its lifelong. I feel actually recovery starts when you come home & start to live life again. yes ofcourse with some compensations. but life does go on after stroke. it maybe little different but it does go on. I stroked at age 34 which left me paralysed on my left side, I never thought I would find joy in living again. but after 7 years in this post stroke journey I view stroke as just bump in our life's journey. My life is still great just little different. agreed I achieve things differently in our household, but important thing is that it gets done. For me blogging on this site & chatting with other survivors made me feel less alone & adjust to my new normal sooner.

 

 

 

Asha

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Judy: I am sorry and especially so at this time of year. We want to take some time off, relax, enjoy good food, family, conversation and then the ball drops-so to speak.

 

Honey, this is a very long haul. There are so many disappointments coming. And on the other hand so many wonderful discoveries and achievements. Fortunately the highs and lows seem less steep and devastating as time goes on.

 

I think as you investigate that you will find that PT did not discharge Oliver, his insurance company did. And unfortunately you are going to have to fight this every year from now on. PT, OT and Speech do their very best to word and comment on their charges the best they can to receive more time. The insurance companies use "plateau'd" as a convenient way to get the patient discharged.

 

Have Oliver continue to work at home every day. Consider a local YMCA or Gym. Have him evaluated by a trainer and see what they suggest. Recovery of his swallowing just takes time. Maybe Speech can recommend some throat exercises for him to do. I would also consider a CNA once a week, if you can afford. Take him for a walk, work out with him and give you some time off. Our CNAs all were trained by Bruce's therapists. They were instrumental in his recovery that first year. I paid above the hourly rate they asked as long as they exercised or did speech with him. If it was strictly CNA work: toilet, meals, naps, clothing changes; they were paid at asking price.

 

Now you know our story. We have posted back and forth. Bruce is 2 1/2 years post. At 9 months post, after paying for private therapies for almost six months. Bruce himself decided he wanted time off. I was devastated. He was suffering over-toning, could not get into his brace, the AFO didn't support his knee well enough. His insurance refused to pay for any more Botox. So he goes from walking a city block without assistance to sitting in a WC. But look at my blogs. We learned to relive our lives here at home. Bruce worked so hard at cognitive recovery-people are now amazed at how far he has come. He exercises his arm and hand every single day. Has now agreed to more therapy now that the Botox is paid for.

 

Look at this break as a time of awakening. A chance to try out new things and discover new pathways. Yes, Bruce has decided he wants to try to walk again, but who knew he would he would enjoy household chores, trying his hand at couponing, now taking over my kitchen-lol! You never know where this stroke road leads and sometimes the detours are dead ends and every once in a while you get to the Interstate!

 

Please take care. Try not to fall into depression or lose hope. This is a blip. Yes, you are disappointed but you regroup. Enjoy some time off from the treadmill. You and Oliver go to dinner one night and with the New Year, some new openings for both of you. And trust me, it will be coming from the back door. Debbie

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I am contemplating retiring, I have worked 37 years in the coal industry in the Human Resources arena. I have a very good job. However, with the PT being stopped, Oliver will need me to help him at home. My caregivers are getting tired of coming. My brother-in-law has been a God send, however, I think he is ready for a break as well. My other caregiver is paid well, but think he is ready to move on. I really think Oliver will do better with me home. The therapist gave us a home exercise program. I have rearranged the house so we can move the exercise equipment downstairs for convenience. I am hoping this will help. I know Oliver was getting tired of going 3 x a week for this past year. However, at least it got him outside and amongst people. I am so afraid he will now become a hermit and want to stay inside. I've mentioned going to a gym, however, we have all the equipment here so he doesn't see the point of a gym. He used to take care of everything while I worked, however now I can't even get him to wash the dishes and yes he could do this. I really don't know who is more depressed, me or him. If I even thought I would have to repeat this past year, I don't know that I would want to live. I am so glad to have this site so I can just vent. I don't discuss my feelings with anyone. I live each day with a smile on my face and pretend as if everything is good, it's the wee hours of the morning that I shed my tears. I love my husband with all my heart and will do anything to help him recover and enjoy life again. Each of you are an uplift to my heart. Thank you so much for listening to me and helping me thru. Happy New Year! Judy

 

 

 

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Hi Judy: As the others said, it's too early to give up! There's always some progress to record. If Oliver isn't ready for a cane yet, use the walker, as long as he's walking--every day. If you can retire and work with him at home, good. There is so much to learn with stroke! I can finally walk outside with supervision--fresh air and saying hi to others is an immense tonic by itself. Work with him every day on the things he can do, even a little. When I make progress, I feel so good I want to do more. Good luck! All the best, Henry

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Judy: take some time to review all this. First off, your job. It is your outlet, your away time. If you have been doing this for 37 years, obviously it brings you great satisfaction and sense of accomplishment. I hate to see you give that up, if you are not ready.

 

Can you work some hours at home? Can you work part time? Could you consult? All things to think about.

 

Do read through our caregiver blogs. Most of us will tell you our people work their hardest and best with their pros or strangers. Caregiver days are cajoling, bribing, threatening, changing routines just to get our survivor to do the minimum. Most of us are thrilled when the therapies are approved again for the new year in that while having to get them there, it takes a bit of the burden off us. Honestly review the amount of time Oliver can be safely left alone. I agree his brother may need a break. As to the paid caregiver, in this economy, I say let him move on. You will find three more ready for the job, maybe at a lesser pay rate with some enthusiasm.

 

I love your idea of setting up the equipment you already have in a convenient area for Oliver to have access. But if you feel you have to spot him, that can be taught to any Certified Nurses Aide and safe for Oliver.

 

In any case, this is a very rough week for you. Give yourself time to get your head around it and review the situation objectively. Review some of Ruthpill, theJule1, HostSarah and HostSally's blogs to see how four very different strokes are handled in the home. Go back to HostSue when Ray was home. Remember Bruce only started doing household chores when he decided to give up formal therapies. Then it was you are not going to sit in a WC and be waited on for the rest of your life. Again, the responsibility is on me as is getting him out of the house.

 

You may be ready to leave the job. One year into stroke recovery is a very huge change in lifestyle. You are tired all the time, never at rest, mentally on tap all the time. I was lucky in that I did not return to work until 18 months post. At that point I had had the time to get my home in order, get Bruce what he needed, have quality caregivers trained in the therapies, get Bruce into water therapy with a CNA rather than me. So I do understand you'd like to just concentrate on your home and family. But please leave the doors and opportunities at work open. When things settle down a bit, you may want to return even if just to train and teach.

 

Please do keep us posted and thinking of you. Debbie

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wJudy,

 

I do agree with Debbie. Rethink the retiring thing. It is good to have the outlet of work. I work and hire caregivers to take care of my husband, William. It is good for both of us.

 

PT is a long rigours rode. I had a year off from PT. Yes, it got old going to PT 2 to 3 times a week. I have decided to let the caregiver bring Wm to therapy and I will do the water therapy on my mornings off.

 

This is a long slow recovery.

 

The first year if hard...but with time I think that you accept how long and hard the journey of recovery will be. I had hopes that we would be back to normal ...it has been 3 years. But,now we have years more to go.

 

RUth

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Therapy is tiring and sometimes becomes old hat. Our survivor gets tired of it and we do too. But when they are discharged it seems like a tragedy. It isn't. It is just the start of a new phase.Somehow life has to be rearranged to make it new so the pool, the mall, take him anywhere that he can walk with the walker and find something interesting to do and see.

 

I agree about work. I left my job as I seemed to have no choice. As soon as Ray came out of hospital 4 1/2 months after the two devastating 1999 strokes I started looking after Mum (Alzheimer's) and Dad (Dad died four months later, terminal cancer) as well as doing all the therapy etc with Ray. I looked after Mum for two more years and she went into care in 2001, after Ray had stroke number four and I quit coping with it all. I think that was my hardest year.

 

You need to have a plan for your life, one week, one month, one year, two years, three years...how long have you got together? I did twelve years of hands-on with Ray and now I am at the nursing home with him at least three hours each day and my heart is breaking again ..but life goes on.

 

Smile Judy, put your shoulders back in public and cry in the shower as we all do. You are a strong woman and somehow you will get through the dark tunnel you are facing right now.

 

(((hugs))) from Sue.

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