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 The Day You Stopped Pushing and Pulling on your LO 
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Joined: Fri Aug 06, 2010 10:07 pm
Posts: 19
Location: Dallas, TX
Post The Day You Stopped Pushing and Pulling on your LO
Hi friends,

Dad is 76 years old, 200 lbs, with severe parkinsonism symptoms to his LBD and I am realizing that, what began as gentle stabilizing assistance and supervision has evolved into him looking at me from a seated position and holding his two arms out like a toddler who wants to be picked up, asking me to literally pick him up from a seated position. Naturally, I have finally hurt something at the base of my neck with pain running down to my shoulder, so I need to stop. That said, when I stop running him around and getting him up and down twice and three times a day, I think he will shortly not be able to get up from a chair...which sounds like one way somebody ends up in a wheelchair. Am I right?

Do any of you remember your own realization that, even though your LO thinks he can continue to live as if he were healthy, you can no longer move his body around for him like a puppet to make that happen? I am so sad for the losses this is going to cause him, like car rides, trips out to the German restaurant for lunch, and the hours he spends at my house (which was built in the 1940's and couldn't be less wheelchair accessible) I am also so sorry that I have to be the one to say "Dad, I can't" when he wants me to pick him up.

Could you wise people please help me imagine how this change is likely to affect him, and help me foresee any problems that may come out of becoming a more or less permanently seated person.

So grateful,


Thu Oct 07, 2010 8:30 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: The Day You Stopped Pushing and Pulling on your LO
My husband only weighs 165 but picking him up does take its toll and I have strained my back several times. I have developed rather large biceps [wish my triceps were as good! LOL!] You're right--they simply don't understand our limitations in this regard. Several times when my husband fell on the floor he fully expected me to just pick him right up, even though he was totally unable to assist. I had to call the paramedics five times and it took two of them, both large males, to lift him up. I do exercises to keep my back healthy and try to use the best possible body mechanics. He won't have anything to do with a lift chair. Sigh! I guess there will reach a point where I am unable to move him at all, even into and out of a wheelchair, and I shall be forced to place him in a facility. :|

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Thu Oct 07, 2010 8:54 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: The Day You Stopped Pushing and Pulling on your LO
I would recommend talking to your father's doctor and requesting a referral to physical therapy to help him strenghten the muscles used in getting up and down. i would try to attend these sessions with him and be included as far as helping him make the best transfers. Often coaching them to scoot their bottom so that it is close to being over their feet, with their feet pulled back as far as possible helps. They should place their hands on the arms of the chair or a sturdy dining table. They push up with their hands and feet and you can guide the body to an erect position. We use a "one-two-three-up" verbal cue.

Also, you can look into getting a lift chair. That helps a lot for the times when they are just too exhausted to move.

But, I woulod caution you...don't do the work for him. The more you do the more he will lose. Muscles are a use them or lose them thing. Of course, he may be too advanced for these tips to work, but youi do not know that until you have a PT person work out with him.

Del just got out of the hospital and we are having some home therapy. We have PT and OT coming in for awhile doing some rehab work with him. It is very helpful and often your LO will do things for them he won't do for you. But you find out what he is capable of doing and you can insist that he do his exercises and do his part in moving him.

When you cannot move him, it is time for a Hoyer Lift...or one of the other lifts that people here like. There is a brand people are very pleased with, but I don't remember what it is.

Good luck. Stay positive.

Nan


Thu Oct 07, 2010 9:15 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: The Day You Stopped Pushing and Pulling on your LO
Frank weighs 157 and also has trouble getting up from a chair and out of bed. I have been able to help him get up but do have arthritis in my hands so I try putting my wrist under his pits to get him up. Most of the time he tries to pull me toward instead of using his legs to get up. I would get a lift chair in a flash, but we don't have room in the den and that's where the TV is. I know he'd never be able to work it but I could and that should help both of us. I'm finding at 8:PM I'm trying to convince myself it's too early to go to bed, but I never know when Frank will decide to get up. I'm finding the physical stress is getting as bad as the mental stress, I'm always tired. BUT then we get a few good days and life continues.

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Thu Oct 07, 2010 9:34 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: The Day You Stopped Pushing and Pulling on your LO
Nan, my husband's muscles are very strong. His problem is not lack of strength but broken signals from his brain to his muscles. His neuros have been very impressed with the tone of his muscles. But sometimes he is just unable to use them.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Thu Oct 07, 2010 9:43 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: The Day You Stopped Pushing and Pulling on your LO
Gerry,
I found if I gave my husband a body hug linking my hands behind his back and we did counting 1....2.....3 and up and of course lift with your leg muscles and not your back!

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Irene Selak


Thu Oct 07, 2010 9:49 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: The Day You Stopped Pushing and Pulling on your LO
Irene is right. I do the same with my Mom - especially when the toilet is involved. The 1 - 2 - 3 count gives both of you a chance to ready yourselves for the lift and then work cooperatively.

We got Mom a lift chair almost 2 years ago. At first she wouldn't use the lift because her pride got in the way. Now she won't use it because (I think) she has trouble with the simple up and down buttons. I'm guessing this because when she uses her lift chair (on the stairway) I need to show her what button to push to go up or down. I don't regret getting the lift chair. When things are really bad, I insist on using the lift mechanism and she usually accepts it. I think it is easier for her to do that because she does remember (sometimes) that I had surgery on my back in 2008 - a single-level fusion at L5. I have degenerative disc disease and I know exactly the pain you felt in your arm, Sue. I'm not a medical professional, but I suggest that you get that looked at right away. If you're lucky, therapy should get you back in the game. And if not, there are other procedures to try before doing anything drastic. Be sure your doctor refers you to a neurologist or spine specialist. Or a pain clinic. (I told my spine surgeon that I couldn't work with the pain clinic because of the time commitment my mother needs and a full-time job.)

You mentioned a wheelchair. Even if it is not needed all of the time, you might want to get one now. I still take Mom out to various places, but she knows she needs to be in her wheelchair. She doesn't mind because she does get to go out often. Also, using the chair for things she wants to do gets her used to using it, enough so that I hope when the time comes she won't fight it.

Good luck!

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Fri Oct 08, 2010 2:02 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: The Day You Stopped Pushing and Pulling on your LO
Irene, Thank you for the suggestion on lifting. I agree with Pat, Frank's muscle tone is good and he is strong, but the message isn't getting thru. He gets a massage and PT on alternate weeks, his PT is mostly stretching and twisting. He just lies on the bed and the PT and I move his legs, arms and waist to stretch in hopes it will keep him mobile. We still walk a mile most days and he doesn't have any problem with that, it's in the house when he starts to shuffle or back up, he falls frequently, so far so good.
Take Care,
Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Fri Oct 08, 2010 6:50 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
Post Re: The Day You Stopped Pushing and Pulling on your LO
Sue - PT and OT can help for a while, but eventually your dad will probably be like mine and stop cooperating with them and/or will be unable to do what they are trying to teach him. With any luck he'll benefit from that for quite a while, but none of us can predict when the big declines will happen. You can only do so much, and this disease will progress no matter what. My dad worked so hard in rehab last summer (09) for 3 weeks, then he either couldn't or wouldn't walk with his walker anymore. I think we tried 3 different PT businesses with various PTs from each of them. He just stopped any attempts at walking and could not even hold his own weight by Dec.
Last Thanksgiving was his last real outing, and I remember the struggle my husband and brother in law had getting him out of the car and into his wheelchair to the restaurant. After we couldn't get him out of the car anymore, I'd get the CGs to put him in the car and I'd take him for short drives, drive-through fast food places, anywhere just to give him a change of scenery. When I go to see him he still wants us to take him out but several of his CGs have hurt their backs, so they won't allow us to take him in a car anymore. (he is now down to 135 lb. from 235 lb.) If he needs to leave the ALF he has to go on their van with a lift for his wheelchair or by ambulance.
It is incredibly sad, incredibly frustrating, but just do the best you can without hurting yourself and without laying a big guilt trip on yourself for what you cannot do.
One note about lift chairs - my dad has had one for several years. Before his mobility was totally gone, but his balance and muscle tone weren't too good, he'd try to get himself out of it and fall. We had more than a couple of calls that he had landed on the floor. You may want to get a professional to assess whether or not that's a good use of money at the point he is right now. Best, Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Oct 08, 2010 9:13 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: The Day You Stopped Pushing and Pulling on your LO
All good points here, a wheelchair even if not needed all the time is a great way to get your LO out even for a walk or the mall, they have the transport chairs that I found worked better inside the home and had the reg sturdy chair in the trunk of the car for our time away from home and also I want to mention some caregivers have said they used a plastic garbage bag on the seat of the car as it makes it easier to turn them and it does help to let them know each step of the process and also as I mentioned earlier the counting really did work for us.
Lift chairs are great and even if you can't afford the price of a new one you can always look in classified section most are gently used and much cheaper, even if the LO doesn't know how to work it you still can and save you own body the trauma of constant lifting. Our Dr asked me one day "How many times did I lift Jim in a day and when I thought about it came out to be about 16 times", that's a lot on your body!
PT is great but short lived for most of them because we also went that route many times too

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Irene Selak


Fri Oct 08, 2010 10:13 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: The Day You Stopped Pushing and Pulling on your LO
One thing I didn't mention about the wheelchair: If you can get your doctor to make a case for it (like not being able to walk a certain distance) you can get Medicare to cover part or all of the wheelchair. If not, you can get a number of good ones through the web for under $250.

Also, be sure you get the right size and sturdiness. Mom is a little heavy, but about 5 feet tall now (used to be 5'4"). She has one that tolerates up to 250 pounds, but is also a petite because she's that short. Chairs are available for all weights and heights. And, try to get it adjusted once you get it. As Mom's was covered by Medicare, we got it from a local company who came out and adjusted it in the presence of her OT. No, the total package was not under $250, but Medicare paid all of it.

Good luck!

Kate

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Sun Oct 10, 2010 1:06 pm
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: The Day You Stopped Pushing and Pulling on your LO
Hi Daughtersue,
My husband is not walking/balancing by himself anymore but we are doing very well with a gate belt. It is a 2" wide, heavy duty but pliable belt that snaps together with a quick clasp that is put under his arm pits (you can put it anywhere along the back but he has fractured vertebrae farther down). I get his feet in the correct standing position and count to three for him and PULL and he comes flying out of his seat to a standing position where I can balance him with the belt, then lead him walking with the belt. He is about 165 lbs and I'm smaller and shorter than he, but it is working great for us. Many replies to you were about PT: all of the therapists I've met wear gate belts on their person to have handy for patients.
Does anyone else out there have a LO that has a grip of steel? When Ken grips onto a steadying pole, the shower hose, my wrist, etc. I cannot pry, coax, cajole or find any way to get him to release. I know it's not him being stubborn, he doesn't seem to know he can't let go. Any release tricks up anyone's sleeve? Sher

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Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Mon Oct 11, 2010 10:03 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
Post Re: The Day You Stopped Pushing and Pulling on your LO
Sometimes when my dad shakes someone's hand he nearly breaks the person's hand. Yet, most of the time he cannot hold a fork, spoon, sandwich, sippy cup, whatever. Weird - either no strength at all or superman strength, but only in his right hand. Sorry, don't have a remedy for it, but maybe someone else will. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Oct 11, 2010 11:09 am
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Joined: Tue Jun 09, 2009 11:11 pm
Posts: 117
Location: Tucson AZ
Post Re: The Day You Stopped Pushing and Pulling on your LO
I found my husband has the steel grip too and that if I pry open his thumb first, the rest of the fingers eventually let go. Just found this after years of him having the steall vice grip.

Does anyone know how/if I can be notified if someone posted to my posts besides logging on and looking thru all of them again. There's gotta be an easier way?


Wed Oct 13, 2010 1:19 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: The Day You Stopped Pushing and Pulling on your LO
Lori, the only thing I do is click on 'view new posts' when I log on and it will show the topics [with little marks to the left] where posts have been added since my last visit.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Wed Oct 13, 2010 12:38 pm
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