View unanswered posts | View active topics It is currently Mon Oct 20, 2014 2:45 pm



Reply to topic  [ 15 posts ] 
 Time for a Wheelchair 
Author Message

Joined: Thu May 31, 2012 6:51 pm
Posts: 60
Post Time for a Wheelchair
Hi All:

It has become increasingly obvious to me within the past week that it is time to get my husband a wheelchair. His legs are getting weaker and he is telling me that it feels like they're buckling beneath him. Yes, I've gotten that idea over the past week, especially when I felt him start to fall and I had to put one arm around his waist and the other hand on his walker, and literally propel him to a place where he can sit down. What's comical about all this is that I am 5' and he is 6'2". Since I can't keep doing this with him, I will be calling his PCP this week to get a prescription for a wheelchair. Lord, please give me strength to get the wheelchair in my car.

_________________
Beth


Mon Jul 16, 2012 12:11 am
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Time for a Wheelchair
Don't make the mistake I did the first time in getting a transport chair just because it's lighter. They are not comfortable and they are hard to push on uneven surfaces or carpets. We had it only a week and had to get a regular wheelchair. Fortunately, we were able to borrow a nice Invacare from our residential community and he is still using it in the nursing home.

_________________
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.


Mon Jul 16, 2012 1:19 am
Profile

Joined: Tue Apr 24, 2012 5:00 pm
Posts: 78
Location: Fayetteville, NC
Post Re: Time for a Wheelchair
We have been so fortunate with the wheelchair from the VA. It has wheels that snap on & off easily. The footrests also are easily removable. This makes it so much lighter for me to lift into the back of the car (and can be done quickly if its raining). If I need to, I can remove the seat cushions since they are just velcro, and the padded seat cover is also machine-washable. I know we have been blessed in that regard, but hope this helps anyone else if they can request those options. The wheelchair does make it so much safer AND has served as a much better chair in a restaurant (so I don't get stuck in a booth as much :lol: )


Mon Jul 16, 2012 6:09 am
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Time for a Wheelchair
Beth,
I think you will see how much easier things can be with a wheelchair, when getting one make sure that you tell them your fears about getting it into the car and we also recieved ours from the VA and they really worked with me, we did later get a trasnsport chair for in the house when things were getting worse and moving him from the living room to the kitchen but Pat is right they are hard to push on all surfaces and not comfortable for the person at all !

_________________
Irene Selak


Mon Jul 16, 2012 9:31 am
Profile WWW

Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Time for a Wheelchair
Gee, Beth. With him 6'2" and you 5', have you been serving as a cane up 'til now? :P

Mom's wheelchair made it possible for us to get her out and about (she loved to people-watch) right up through the weekend before she passed. It was a godsend for all of us. But there are a couple of things to keep in mind:

Pat's right. Especially with the size difference, avoid a transport chair. They are not meant for extensive use.

When you get the prescription for a wheelchair, make sure it includes having it sized and equipped by an occupational therapist. We got Mom's when she completed a stay in rehab. Mom, like you, was fairly short. So she was sized with a petite chair. If size and height are proportionate yet, you may be looking at a bariatric chair for your husband. Also be sure that all the accessories you can get paid for by Medicare are included. If you do this through the OT, chances are that you will get exactly what you need. If you wait or just get something off the Internet, you may end up needing to "trick it out" or replace it at your own expense.

Mom's petite chair ended up being so short that her daughters all had to bend a bit to use the handles to push her around. We were told that they couldn't do anything about that. Partly because they didn't have an easy solution and partly because Medicare wouldn't pay for something that made things easier for the caregiver - only for things that were required for the patient. I have a very clever sister who got some bike parts and added a set of handles that were high enough for us to push the chair without compromising our backs (necessary for me, as I have already had back surgery). I suspect you will have the opposite issue, especially if a bariatric chair is specified. You may need lower handles to push the chair. Do not try pushing a chair that isn't set up for you to push. You are likely to do yourself serious injury. If the therapist is not able to get something that will help you protect your health while pushing the chair, find someone handy and have them check into what might work for you. But most important is to get an occupational therapist to make sure that the chair provided is the right chair for your husband and (if possible) for you.

Make sure that, when you take delivery, you are shown all of the moveable parts and that you are shown how to get it in and out of your car without hurting yourself. Luckily, I have a van and Mom's petite chair was easy for me. With a bigger chair, you'll need to be able to find the easiest way - with professional help.

For both your and your husband's sake, make sure the OT trains you on how to transfer him into and out of the chair without injuring either of you. And if either of you are not feeling strong enough for a transfer (it occasionally happens), forget going out for that trip. There will be other opportunities. (I almost dropped Mom once when she was too weak to handle her end of the transfer.)

I wonder if you could get your own doctor to write a prescription for you that would cover having a therapist work with you on how to work with your husband's chair. I never tried this, but I probably should have because I really aggravated some back issues. And my sister literally destroyed her shoulder. If it is to protect your own health, your doctor might find this helpful. It's worth trying.

If everything comes together right, I think you'll find that the wheelchair will increase the number of things the two of you can do. Good luck with it.

Oh, and I just saw a TV show that showcased a volunteer group in San Antonio that built a ramp for someone who couldn't afford one. They can be pretty expensive. You might want to check into senior services and volunteer groups in your area to see if you can get some help for that, too, if you need it.

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]


Mon Jul 16, 2012 10:18 am
Profile

Joined: Thu May 31, 2012 6:51 pm
Posts: 60
Post Re: Time for a Wheelchair
Well today ended up being quite a day. I was able to make a doctor appointment for my husband, but before we went to it, we went to my allergy doctor's office for one of my twice weekly allergy injections (actually I get three injections twice a week). On our way into the doctor's office, my husband fell (he thought one of the double doors was locked and leaned against it for support; but it wasn't locked and down he went. It took two men to help him get back up. He just weighs too much for me to be able to help him get up when he falls. He has been having so much trouble with his walker lately. Suddenly, he has become much weaker when standing and shakes a lot! It makes me wonder if he has taken a turn for the worse.

When we got to his doctor appointment, the Nurse Practitioner looked him over and found no bruises, but my husband told me tonight that his back hurts. Thankfully, he doesn't have a UTI, but he is very dehydrated. I try and try and try to get him to drink more, but he won't....and his appetite - well, a bird eats more than he does. At his first appointment with his new primary care doctor, she suggested giving him something to help improve his appetite. Not sure what it is, but at this point, I'm willing to give it a try. Has anyone else heard of such meds?

Yes, we got a wheelchair this evening. Thank goodness the medical supply store was open until 7 p.m. Yeah! After I told them how tall my husband is and how much he weighs, they set him up with a heavy duty wheelchair, which is hard to pick up and put in my car. Did I mention that I have very little strength in my arms and that I have a ganglion cyst beneath a previous surgical scar on my left wrist? I know we're supposed to take care of ourselves first, but how can I take care of my health problems when I have to take care of him? Right now I have two areas on my body that need medical attention, possibly surgery...but I can't do it. I have to take care of him.

And we're not rich. We live month to month. So trying to find someone to come in full time to help take care of him is not an option. And you know what really rubs me now? I have a niece who is a CNA, but I won't ask for her help because she's on drugs!!! Argh!!!!

So now some more questions. How do you know when it's time to put your loved one in a SNF? And how do you live with the guilt that you failed them by not being able to take care of them at home?

And Kate, I guess I've always been sort of a body cane for my husband, as my height is just right to fit into the crook of his side. 8)

_________________
Beth


Tue Jul 17, 2012 1:57 am
Profile

Joined: Tue Apr 24, 2012 5:00 pm
Posts: 78
Location: Fayetteville, NC
Post Re: Time for a Wheelchair
oh gosh! The things we endure...is there a way you can call the doctor and have them prescribe a better, lighter wheelchair? Can you say that he needs one that is lighter because of his loss of strength? The one we have is built with those removable parts and was fitted to Ted's body size because even though he stoops now & is shorter than me most of the time, his limbs are quite long. This makes such a difference in how he sits in the wheelchair--not to mention the cant of the seat itself to try to help his forward lean. Gosh, my heart goes out to you. Yes, there ARE better wheelchairs. I just wish I could reach out and get someone to advocate for you and get you one. So much work, so much paperwork at every turn. You are doing your best and don't give up. Did I tell you I walked around for a week with screws for Ted's rollator in my pockets because one of the screw for the braking mechanism had fallen out? Here I was, trying to fix one more thing...Finally the hospice folks asked me what I needed and the light bulb came on. They supplied us with a new rollator, whew. But it's so hard to know where to turn, who to ask. Maybe a phone call to your doctor to see if they have any solutions to your wheelchair dilemma? You are NOT asking for too much. You are taking care of him AND you. You are both worth it. Every time.


Tue Jul 17, 2012 5:17 am
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Time for a Wheelchair
Beth,
I think the answer to your question "How do you know when it is time for placement?", I think the answer is when you ask your self is your Loved one getting the care that he needs , much can come from that answer but the bottom line is you have to be honest with yourself, I am sure many will chime in here, your care giving doesn't end at the door of a facility it just isn't all the physical part. Some hard decisions to make, I wish you well !

_________________
Irene Selak


Tue Jul 17, 2012 9:09 am
Profile WWW

Joined: Wed Sep 30, 2009 8:25 am
Posts: 227
Post Re: Time for a Wheelchair
I , too, am wresting with the idea of a wheelchair. My MIL is still vain underneath the Lewy veil and is balking at this. She keeps falling so maybe just at her weakest time of the day (mornings) until all the meds kick in.

_________________
Donna (age 56) caregiver for mother-in-law Margaret (age 88).


Tue Jul 17, 2012 9:29 am
Profile

Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Time for a Wheelchair
Beth,

First, don't give up on getting the wheelchair you both need. I know that Medicare will only pay for one, but take the one you got back to the medical supply store and explain the problem. Ask about one that does what Jean's does, with wheels that come off. They may be able to help you with this. They should help you with this. It sounds like they did a good job sizing the chair and probably got you one that they were sure Medicare would cover. But it doesn't work for you if you can't get it into the car. (They should have noticed the difference in size, but they may have assumed you had help.) And make sure that they see you getting the chair into the car yourself - both the trouble with this one and any success with its replacement. While the concerns of the caregiver are not paramount for Medicare when approached from your husband's needs, your doctor may be able to contribute by providing weight lifting restrictions for you or even putting in writing that you need a different chair for your husband. Your own doctor needs to be as involved in your caregiving role as your husband's doctor is. Don't give up on the chair yet and keep going back until it is what you need it to be. This, and a Hoyer (or other brand) lift, are probably the most important pieces of equipment you will have when caring for a large man. They need to be usable.

Now, about the SNF. The decision about the SNF has to be as much about you as it is about your husband. That is not selfish. It is practical and even loving. If, for any reason, you cannot provide the care your husband needs, it is time to consider a SNF (or full time care at home, which is seldom covered by Medicare). And it is important to start looking early and getting on waiting lists for a few of the ones you really like and that will take the kind of payment you can make (not all take Medicaid). It can take months, or even years, to get into some of these places.

But back to the decision. If you cannot reasonably provide the right care for your husband in a practical setting (a house with stairs could be trouble), it is time to consider an alternate plan for care in which a SNF could be a part. I waited too long in did irreparable damage to myself. And I know Mom would never have approved if she had realized it. (And I hid the damage from the rest of the family so they wouldn't think I couldn't care for her.)

The decision is as much about you as it is about him. Are you over your head? Are you sleeping? Are you getting some time for yourself? How are you emotionally? Really, all of these things are things you need to care for in yourself in order to do your best for him, wherever he is living. Yes, the stereotypical SNF is a little scary. But most aren't like that. And any negative is balanced by the availability of 24/7 professional care given by people who know what to do and are physically able to do it. True, there is no one-to-one ratio between resident and aide. Most aides have between 4 and 8 people to take care of. You should consider staff to patient ratio when choosing an SNF. But there is also companionship from more than one person, activities, therapy (if prescribed by your doctor) a dietician who can tailor his menu to what he needs (perhaps a soft diet would be useful from time to time), full-time nurses and quick access to doctors, and cronies. And I know that men and women who can still communicate really love having cronies to talk to (or "at" sometimes). It isn't a bad thing to consider an SNF. It's practical and even loving.

Start looking now, even if you want to wait for a bit. The good ones often have waiting lists that can go months. And touring a couple now will give you an idea of what to look for. (Don't take your husband with.) Also go to http://www.medicare.gov. Click on Facilities and Doctors (on the left) and then on Compare Nursing Homes (or anything else you want to learn about). SNFs go through a number of inspections each year and Medicare ranks them based on those inspections. Don't make your decision entirely based on those rankings, but they will help you decide what ones you want to look at. You can also click on Plan for Your Long Term Care Needs, which can really help you with this decision.

Good luck with this. Keep us posted and let us know your impressions of the facilities you look at.

Remember that you are as important as he is.

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]


Tue Jul 17, 2012 9:43 am
Profile

Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Time for a Wheelchair
Do a search on the forum for "megace," which is an appetite stimulant drug.

Julianne


Tue Jul 17, 2012 9:46 am
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Time for a Wheelchair
irene selak wrote:
Beth,
I think the answer to your question "How do you know when it is time for placement?", I think the answer is when you ask your self is your Loved one getting the care that he needs , much can come from that answer but the bottom line is you have to be honest with yourself, I am sure many will chime in here, your care giving doesn't end at the door of a facility it just isn't all the physical part. Some hard decisions to make, I wish you well !


I'm not sure that is the criterion I would use, because most of our LOs receive better care at home than in a facility. The question is: At what point are we simply unable to do it any more? When I hurt my back for the second time in a month, I placed my husband for a two week respite while my back healed. While he was in there, I saw that he was a two-person transfer and that it took two aides to dress him in the morning and get him ready for bed at night. He was often uncooperative, sometimes combative, just as he was at home. So I made his placement permanent. Interestingly, he never fully realized the situation---it was just another delusion, I guess. He still thinks I live there, too, in another room.

_________________
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.


Tue Jul 17, 2012 9:51 am
Profile

Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Time for a Wheelchair
Donna,

Try it from the angle of being able to go more places and stay longer. That's what worked for Mom. She, too, balked at first.

Here's a way to ease her into it. Go to shopping malls or other places (grocery stores?) that provide wheelchairs or scooters. Suggest that you could both stay longer and get more done if she used one. Or, wait until she gets tired and then go and get a wheelchair for her, suggesting that there is still more for the two of you to do.

At first, Mom had fun with a scooter, but she was a lousy driver. My sister would also take Mom (in her wheelchair) with her when she power-walked the Mall of America. Just like a kid, Mom loved the speed.

After using the mall wheelchairs a few times, you could suggest that having her own might be more comfortable and cleaner. Be sure she knows she doesn't always have to use it - just have it handy - just in case.

Worth trying?

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]


Tue Jul 17, 2012 9:59 am
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Time for a Wheelchair
Pat,
I think that both meanings come to the same conclusion bottom line is if a person can't care for their LO and that LO isn't getting the care they deserve even if it is because of injury to ourselves placement is something to consider and they way you did it was great I think it really gave you the window to see Derek was a 2 person lift. I often think we won't admit to ourselves we no longer can care for a person with such physical disabilities at home. I am sure if I would have found a place like you did for a 2 week respite I would have placed my husband and not ended up with all the health issues I have because of lack of care for myself for so long while the caregiving yrs were going on !

_________________
Irene Selak


Tue Jul 17, 2012 10:14 am
Profile WWW

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Time for a Wheelchair
irene selak wrote:
Pat,
I think that both meanings come to the same conclusion bottom line is if a person can't care for their LO and that LO isn't getting the care they deserve even if it is because of injury to ourselves placement is something to consider and they way you did it was great I think it really gave you the window to see Derek was a 2 person lift. I often think we won't admit to ourselves we no longer can care for a person with such physical disabilities at home. I am sure if I would have found a place like you did for a 2 week respite I would have placed my husband and not ended up with all the health issues I have because of lack of care for myself for so long while the caregiving yrs were going on !


Yes, Irene, you really sacrificed your health and it bears repeating in order to warn others. I guess the point I was making was just that. We are inclined to sacrifice our own sleep, health-- and, sometimes, sanity--for their care, just as we would for our children. It's probably part of our genetic makeup. And, as you say, unless we can step away from it temporarily, we may not realize we are in over our heads. As an RN, I knew I was a competent caregiver but didn't know my limitations.

_________________
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.


Tue Jul 17, 2012 10:29 am
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 15 posts ] 

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by MaĆ«l Soucaze © 2010 phpBB.fr