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Home Care Team


johnk6749

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I feel like the Home Care Team has become the Home Invasion Team. They are passing each other in the doorway coming and going. I have been told by most of them to look into bringing in more people. I told them that there have been more people in this house in the past 2 weeks than in the past 20 years.

 

Yesterday Mom had what I would call a good session with the Speech Therapist, but it became emotional when Mom started talking about her brothers and sisters and she started crying. It took a lot out of her and she didn't feel like doing anything after that. Then the Physical Therapist came in and wanted Mom to start doing exercises which she didn't feel like doing. The PT got frustrated because Mom couldn't just turn off her emotions from the previous session and work with her. She is a sensitive 88 year old woman, not a machine that can be turned on and off. The PT spent the rest of the time acting like a bull in a china shop. I should have told her to leave, but I am too nice.

 

The Team also doesn't seem to want to understand that Mom had conditions before the stroke. She has had arthritis most of her life, she had a mastectomy in 2011, and a minor stroke in April. Much of the PT she would have had trouble doing pre-stroke because of the arthritis.

 

They give me praise for being an excellent caregiver, but then tell me that I should hire people to be with Mom so I can go and do whatever it is they think I should be doing instead of caring for Mom. They want to micro-manage my life. My life was crazy for years tending to Mom's needs, but no one cared then. Now that this is my priority, they want to tell me what to do. I think I should be the one who decides what I should do and when I should do it.

 

John

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Even though you were caring for your mom before the stroke you probably had some down time to do things for yourself. If you don't still take some time for yourself you're going to get burned out. Everybody needs some "me" time once in as while.

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You need to have a good sense of humour to deal with the incoming therapists with their demands and their need to be number one for the time they are with you.  The speech and then the physio is the wrong way around so see if you can get the times reversed.  The speechie should stop when your Mum's emotions are affected too, calm her down and then get on with the therapy. Just being emotional will tire your Mum out..

 

Yes, you do need time to yourself, don't get offended, it is true. The caregiving role is long term and so you need to pace yourself. We all get burnout if we don't and get angry, frustrated, impatient etc, either with the one we care for or those who come in to help.It is easier to see life in perspective when you have time to sit and just breathe for a while.So do take advantage of any time out you are offered.

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Of the three levels of therapy my wife has undergone (inpatient, outpatient and in-home) the in-home kind was our least favorite. It seemed that the therapists were coming and going all the time, generally scheduling their appointments in terms of wide "windows." We spent as much time waiting for therapists to show up as we did with them once they arrived. When you have a couple of two- or three-hour windows during which a therapist is scheduled to arrive, it pretty much shoots your entire day. I think this method of scheduling began with  cable TV repairmen and has spread like kudzu ever since. This approach to scheduling is designed for the convenience of the therapist, not the patient.
I agree, by the way, that you do need to find some time for yourself. I know you are a dedicated and loving son but you will do your mom no favors if you wreck your own health. So take a break from time to time without guilt.  

A final suggestion is that you not hesitate to be assertive with  your mom's therapists if you think they are doing something wrong. Your mom is the "customer" in the patient-therapist relationship. And your role is to be her advocate as well as her caregiver. 

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John: excellent responses all around. What I did do with Bruce was schedule the three therapies (PT, OT and Speech) on different days. That way he dealt with one issue at a time. And I did not do windows - you are here at a specific time or we will reschedule.

 

All three of Bruce's home therapists encouraged me to leave when they were here. Only 45 minutes or so, but enough to run to the store or bank. They assured me that if I needed teaching, they would let me know ahead of time and they did. So just another idea. Debbie

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It depends on how your insurance reads.    Bob  got 100 DAYS of inhome therapy.... so, if they all came on different days, they would be used up in a month.   By all coming on the same day, it was 3 therapies for only 1 day. 

 

Our OT person fancied herself a phsyciatrist (sp)   and she would try to get Bob to talk about what upset him.   That was NOT her job, and she would come in and he would be happy, and she would ruin his mood by trying to get him to talk about his losses - double maddening because he didn't even think of that without being prodded, because he just didn't have that much brain to work with back then, and was just trying to do his therapies, and she was trying to turn it into a weeping session.   I made sure to tell her that she was there for OT and please don't try to be a physchiatrist, because that was not her field, and it was ruining his sessions that she was there to do.  

 

I'm on the opposite side of the spectrum and just don't like people in my business, nor handing over control to any of them.   I'm the one that understands him, and they are going to have to deal with me.   2 of his therapists were idiots, and I would never have left while they were here, as he couldn't speak for himself, nor relate to me anything that happened while I was gone.  His OT spoke very fast and 3 commands in the same sentence and he was just left with his mouth hanging open.  She was just too stupid to realize that he had cognitive problems and she needed to slow down and speak one command at a time.   She also was encouraging him to grab the door frame with his one hand and try to HELP pull himself thru the doorway.  Now how does he running into the frame sideways help me?!  And I don't need to take time to repair/paint door frames.   Then there was the time I was just a few seconds behind her and came into the bathroom where she had put the bench in the tub and was instructing him to grab onto the PLASTIC SURROUND TUB RAIL and pull his weight across the bench.   Just as I walked in, I heard cracking starting from the wall and screamed to stop.   I can't believe I had to tell her that it was not a handicapped rail, and should not be used as one.   It was merely a balance rail and cloth rail held in by plastic and if I hadn't walked in just then, I would no longer have been able to take a shower in there, because of the cracked shower surround wall.    So, you see why I'm saying what I'm saying.   She would also be getting him ready to sit with his stroke foot turned completely out and if he had sat like that, it would have destroyed his knee.   I stopped her repeatedly from doing that.   And instead of taking the initiative and being sure to say, ok, now lets make sure your feet are in a safe position before we sit - nope, she asked him 'how does it make you feel, when she stops you everytime you go to sit down?'   I wanted to tear her a new one!   I told her it makes him feel a whole lot better than needing knee surgery would.   There were quite a few times that the OT really did some stupid stuff that if I had not been there, bad things would have happened.   Well, I get so mad everytime I remember those things I go on a rant.   But, forwarned is for-armed, you never know who you'll get.  Don't trust anybody, just because they have the job, that doesn't mean they are good at it.    Besides all this, the things that were good that happened, I would not have learned myself if I had not been here.

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I guess I have to put my home therapy experience in here.  I had a wonderful team.  Larry had Medicare so that may have made a difference.  He had OT, PT, a nurse and a shower aide when he came home.  All were wonderful and like family to us.  The OT didn't even mind Lucy, our cat, climbing up on her legs in back for attention. lol  She said "I wish my cat did that".  The PT had Larry walking outside, walking down basement stairs and walking backword.  She was great!  One of the therapist even let me run up the street to the Fed X store to send a FAX a couple of times.  I cried when they left but stayed as long as Medicare let them.  I finally was able to get a "home helper" in from Larry's Long Term Care Insurance, for a couple hours 2-3 days/wk.  

 

Your mom is in good hands with you but don't feel guilty for taking time out.   

 

Best wishes for her continued recovery,

Julie

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John, sorry. I should have qualified. We paid privately for Bruce's Speech Therapy. The reasons are in my early blogs and doesn't really matter, because this is about you and Mom and finding a balance now that Mom is home.

 

You have had much time with her therapists in the hospital, that I know. You sat in now for a few sessions with the home therapists and are aware of how they work with Mom and more importantly, how Mom works with them.

 

You have to be proactive. If you know something is now working, you have to say something. These are pros. They will either adjust or you ask for someone new.

 

These sessions are important and there are no "redo"s. Go with your gut. Debbie

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Debbie, we started off with a great inhome speech therapist, but she was not really our area, and once they got a new one for our area, she took our case.   Unfortunately, this new therapist did no teaching of words, no cueing, no nothing.    She came several weeks and all she ever did was show him pics of things and check off which ones he named correctly and the percentage of rights/wrongs.   At first I thought she was just doing a eval, so she'd know where to start with him.   After a few times, I told her, this was not therapy, she was just testing him constantly.   Her reply was that he seemed to be a bit improved, and my reply was, yes from what I'M teaching him!   She got really honked and defended her method as the latest most expensive book for this, and I rejected it.   She angrily asked, 'so, what you want is for me to just go over words with him and cue him on them? (asked in a voice like I should be ashamed).   I said, yes, that is what I want.   She left in a huff but the next time she came back, she was all in to it.    I'm guessing the previous experienced therapist set her straight and also the agency that was at risk to lose all 3 therapies if she couldn't get it together.

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As far as I'm concerned, the Speech Therapist brings the most value. Mom had a very good speech therapist when she was at Moss Rehab, who was also the manager. Her ST now is young, but I think she does her a lot of good. Mom and I talk a lot when we are alone. She has been coming out with some things that surprise me, as far as cognitive abilities. Yesterday she wanted to try to crush her own pills. This morning she told me she remembers her Oncologist where we have an appointment next week. She said she had a song running through her mind, so I asked her to sing it to me, which she did. She has been resting a lot and I think it is helping her to heal.

 

The aide is a pain. I have to get her set up, then I have to clean up after her when she leaves. The OT was on vacation last week. I haven't heard from her yet, but she is also of limited value. Mom's PT at Moss Rehab was excellent; very patient and understanding. What her PT does now could be done by me. She still can't understand how I get the wheelchair out the door and down the sidewalk. Maybe she needs training, but I'm not going to be the one to train her.

 

The only one I ever left her alone with is the nurse. The therapists all need assistance from me.

 

John

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John: I too also felt Bruce got the most from his Speech Therapists, but really that was our true focus once PT got him out of the lift and transferring alone with me.

 

Go with what you have and you will know if it is time to make a change. Her cognitive recovery is truly remarkable. So important and I know she must be feeling better about recovery with that kind of improvement.

 

Keep us up to date. Debbie

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Hi John,  please that Mom is making so much progress with her speech!  That is wonderful.

 

Remember John, if you are not please with something go with that "feeling".

 

I know we keep on saying it, but you are imporant as weel, so get some "me time"

 

Take care John love to Mom and You

 

Yvonne

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