John's mobility has taken a sharp turn downwards. So many falls, so many holes in the wall, etc. I have a transfer chair from Amazon that I have used up until now for trips that required a lot of walking in order to preserve his strength. Our walker no longer meets our indoor needs so the Dr. has ordered a motorized chair with the ability to tilt.
Up front the motorized chair sounds wonderful, but the more I think about him using this 300# plus machine scares me to death. Between his lack of judgement and worsening vision and then there is the dog being terrorized! Another worry is how do you do the bathroom ? I have been holding/helping him use the toilet to urinate but my back is really paying the price as John is 6' and 230 #'s. Between taking John to the bathroom 3-4 times an hour and watering the puppy hourly (10 months old) that is my day. Watering everyone. I am physically and emotionally spent.
I offer this conundrum up to the wisdom god/goddesses' for everyone's advise. You've never let me down. Unfortunately I am probably at one of my lowest points yet.
So, manual vs. motorized? Bathroom tips?
Thanking you all in advance,
Alice
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Abrecheisen53
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21 Replies
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Until you physically can’t push him I would avoid a power chair. The thoughts of Larry trying to use a motorized chair is a laugh. He can’t use the TV remote or the hand control for his lift chair. I wonder if there is a power wheelchair with a remote for you to control it.
Hello Alice, please take heart in the fact that there are many people here who will help and support you.
Jackie has MSA rather than PSP but there are similarities as you will probably know.
I think the answer to your question is both! Jackie’s dexterity has also deteriorated and she is not always able to manoeuvre her electric wheelchair around the house. We still find it useful and I frequently help by turning the speed up and drive her about into the garden etc . We do however also have a lightweight wheelchair that we just use in the house which we find far more manoeuverable and easier to go into the tight spaces of the bedroom and bathroom.
Here in the UK the NHS have also provided Jackie with a wet room wheelchair which is ideal for showering on the more difficult days.
Now as far as urination is concerned, John needs to do what Jackie and all the girls do.....sit down!! I know he will protest at first but your health, and back, is as important as John’s.
I think manual with a power pack to make pushing easier for you. My mum's tiny but pushing a wheelchair up hills hurt my back after a while. The power pack has been one of the best things.sorry no bathroom tips. Good luck .
A puppy must be great fun
Lynda 😊😊
Hi Alice... l feel your befuddlement... (not sure that is a real word).
Mom gave up her driver's license after hitting her garage a number of times. Her skills nor PSP eyes had improved... so we were surprised when her dr suggested a motorized chair. Scary
Each case is different... to some the motorized wheelchair is a blessing... lsn't it great to get information from this knowledgeable group of understanding friends.
We had a power pack on the wheelchair which I controlled - my hubby had such more spatial awareness he would have been a liability. We used a wheeled shower chair between bedroom bathroom which worked well.
With regards to the frequent urination when we got to this stage despite 3. different “ waterwork’ medications we turned to Accupuncture more specifically Posterior Tibial Nerve stimulation. This improved frequency from every 20-30 mins to 3 hourly -it never improved the urgency but we kept a urine chart so carers or I knew when to toilet my husband. This reduced falls considerably . Would highly recommend the PTN stimulation
Sounds like you are juggling many challenges -I hope you can get extra support to help manage these
My husband wasn’t permitted a motorised wheelchair by the U.K. NHS as he couldn’t control it safely by himself so I bought a motorised tilt one which I controlled. It was the best piece of equipment we had as I could take him out anywhere, moving him with one finger. No more back strain and it took him across the roughest ground and up the steepest hills. The power pack I bought for his ordinary wheelchair was useless but I know others liked them. As for toileting, another Godsend was the convene. No more trips to the loo, he could go where he was and urine went into a bag on his leg. It’s like a condom with a tube attached so does not enter the body which can cause infections. Again, not suitable/ liked by everyone but with a hoist, electric wheelchair and convene we could go almost anywhere we wanted and did until 3 weeks before he died.
I was in a similar position earlier in the year. Chris was falling, particularly in the early hours when he wanted a pee. Read about Conveens on this site, spoke to our District Nurses who ordered them up. With the exception of a few failures, they work beautifully, my hip is happier and Chris is only having falls when he decided to do something he can no longer do! I use a comode chair to move him around the house and have just converted the family bathroom into a wet room which has created loads of space to manoeuvre around.
I have a standard wheelchair but am waiting for our local wheelchair service to come up with proposals. They want him to have one which tilts to future proof it, I'm only 5ft q so would prefer a powered one but they are so heavy! Chris couldn't see to drive one! So impasse at the moment.
I hope you find a solution and that these comments help.
I would not trust my husband with a motorised chair. Like Jeff, my husband can not operate the vertical lift we have or the remote for the tv due to his poor vision and slowness
Mary now has a wheelchair provided by the NHS mobility center with a power pack. She spends most of her day in it but needs moving (toileting) every 4 hours. This is done using a stand an electric stand assist. We maintain her toileting with Tena 2.2 litre pads which gives us freedom once she got used to them. They can stay in place up to 8 hours without detriment. Your husband will have to overcome years of standing up to do his business and just let it all come out!! Showering is achieved by wheeling her into the shower on the commode chair (but take to potty out).
The wheelchair is large and a tight fit through the doors. I have had to buy a wheelchair accessible vehicle in order to get her out and about and receive necessary stimulation. Hope this helps. Rob
Sounds to me like a powered wheelchair under hubbies control could be asking for trouble. Mum fancied one of these and I had to say no, she would have just driven into everything, the riser/recliner chair control is beyond her, so a wheelchair would have been downright dangerous.
With regard toileting, Mum is on Trospium which is for overactive bladders and has pads for accidents, she needs these particularly at night.
On the standing position did you know that in some countries it is normal for gentleman to sit down at home, as it is considered more hygienic? The things I learnt working with our continental cousins! Maybe you can use that to persuade him to change his technique!!
By reading you message i can feel how you feel. My husband has a mobility like your husband. Can he stand and move from one chair next to another chair? You can put him in the commode has a wheesl and push the commode from the room to the toilet and push the commode without the pan straight over the toilet cubin this give you less strengh each time he want to go to the toilet. So he only moves himself once from the chair to the commode but make sure that you mesure the height of the commode and the toilet cubin.
For his bath you will need a patient turner if he can't move and an Electric Bath Chair in the Bath and you do the same way as taking him to the toilet move him from the chair to the commode with wheels and push him to the bathroom and with or without the turner he can seat on the electric bath chair you can help him to lift his leg into the Bath and do the same way to get him out of the bath.
Chances are his dexterity will deteriorate to the point of not been able to use it at all. I'd only get a powered one that you control or stick with a manual one. Also any powered version will require a special vehicle to move it around, can't be folded up and placed in a car.
I have been through this exact situation over the past two years, it is somewhat loaded emotionally for me, but after moving into an assisted living facility, my mother’s roommate had an electric chair and mom, with her fixations (CBD), insisted on a chair and she did not want to wait for a healthcare evaluation. She had the funds to purchase one out right. I did not think she could use one because of her spatial and judgment issues with her worsening condition.
Mom wore me down and I finally bought her one (she is quite a tyrant since having this condition and can be very unpleasant to deal with and her obsessions make her relentless), but very quickly the facility was concerned about her ability to drive - she ran into a resident almost knocking him over which made me realize that we could be in a position for a liability if she could not control the chair properly. She caused quite a fuss and they eventually put her through a training test and after two months she passed but barely. She’s had and used the chair for the past 2 years, which has added greatly to her happiness as to what little slice of independence she feels she still has; she can go outside to the patio or down the hall for her hair appointments on her own but otherwise she really doesn’t use the chair much.
We’ve had quarterly conversations about taking the chair away from her as she has absolutely destroyed her room at the facility - holes in doors and in every piece of furniture, Formica ripped off all the cabinets, deep gouges in the drywall along all walls. She has also injured herself many times including ramming her arm and hands into tables, breaking a finger, large hematomas on her arms, ripping off a toenail and most recently - causing a serious gash in her leg to the point the blood was pooling on the floor before they found her. She carries on something amazingly every time we tell her that we’re going to switch her back to a manual chair - she cries and begs and pleads and whales. She claims she doesn’t care about the injuries, she’ll take them for the freedom she feels she still has, but with this last incident - the decision has finally been made that we will be putting her back into a manual chair. I’m not looking forward to the endless calls and the high drama as she vents her frustration over this next phase — it symbolizes her continued deterioration and loss of freedom - I get that, but letting her have the electric chair isn’t going to prevent the inevitable.
Also, because she has balance issues she never feels like she is sitting up straight in the chair and she often calls her aides to adjust her, sometimes every 10 minutes. When they don’t come, she screams and carries on and cries “help” as if she’s fallen. She’s been talked to many times about this and they’ve asked me to talk to her as well, because it’s a little bit like the little boy who cried Wolf - but I do realize that she just doesn’t understand and that it’s her brain making her feel like she’s tipping over. This isn’t going to change obviously though with a manual chair.
We opted for a manual chair for my husband because even he realized that he didn't have enough dexterity anymore. Plus, his reaction time was so slow that he would have hit something before he could react. Thankfully, he never fussed about this decision.
A solution for the bathroom issue is a stand assist device which will allow you to move your husband safely. We never had another fall using this device. For us, it seemed that the KISS (keep it simple stupid) attitude worked best when looking for solutions as these problems came up.
My husband has a power wheelchair and I don't know what we would do without it! It is 450 pounds (Quantum Edge is the brand) and it is wonderful for restoring a part of his life which we thought was lost. He can't walk more than 100 feet with the walker, so almost daily he "goes for a walk" with me of 2-3 miles around our neighborhood. I am quite petite and could not push a chair for that length of time. He has some cognitive and spatial impairments, but he does ok after we get the wheelchair going and at a constant speed (there multiple speeds on the chair). Sometimes, his meds make him sleepy and we have "custodian controls" on the back of the chair, which I can manipulate for him. These walks are special because he gets to be part of the outdoors again and they are also social, in that we see people who stop to greet him and chat a bit. Last week I got a conversion van so that accepts the chair and went away from home for the first time in 2 years-- took a 4 hour drive up to the mountains for a few days. Inside the house it is a bit challenging (some bumps into furniture and walls), but we keep it at the very slowest speed indoors and that seems to help. Good luck with puzzling this out
I eventually had an electric wheelchair for Ben that I OPERATED from controls fitted to the back of the chair as he wasn't able to operate it himself. It took a bit of practice but eventually got the hang of it and it tilted making it safer and more comfortable for him. It is very hilly where I live and I just couldn't manage the normal wheelchair any longer and the electric chair was much more comfortable. Ben also wore a convene, again takes practice but it was a life saver for me. Do you have a rotastand for getting him moved from A to B in the house? Again a very valuable piece of equipment that I couldn't have done without and made Bens life much easier too. Hope that helps
We have a manual wheelchair which we use indoors and outdoors, it also folds up nicely and fits into the boot of the car. We do have the odd scrape along the doorframes, but nothing major ( as yet).
As for toileting, it took a while to convince W to sit down to pee, but one day after I had to wash the floor several times, (his downward gaze is impaired) I told him he would either have to sit down on the loo or he'd have to wear pads. There was no argument after that.
I've tried to get him to wear a pad at night because sometimes I can't get him to the bathroom soon enough, but he refuses. I lost the head one night and slipped one into his pants but on his next trip to bathroom, I found pad, pants and pyjamas trousers at the bottom of the bed. How he got them off I don't know as he can't dress/undress himself, and I was lying beside him and never felt him moving, but it made me laugh as to how determine he was.
Good luck in making your decision. Lots of loveNanny857xx
Thank you all for your pearls of wisdom. I knew I could count on you. I still don't know which way to go yet, but I have another month to think about it. There are pros and cons for both options. The wheelchair vendor postponed the decision until after July 1 once John turns 65 and becomes eligible for Medicare here in the US. Argh! It is so very frustrating at times.
Also appreciate the bathroom tips. Not a pretty subject, but unfortunately all too real. I even read to John some of the responses, especially the ones about sitting down ;-). He even chuckled!!!
Thanks again for all the ideas. I will let you know what happens. Stay tuned for "Part II".
Sending you all a HUGE HUG and wishing you strength to make it through another day.
My husband was also going to the bathroom frequently which resulted in numerous falls because he'd always panic trying to get to the bathroom in time. Most of his falls were in the bathroom resulting in hitting his head and back on hard surfaces. We also never got a good night's sleep because he would be up three times/night. Fortunately, he was never seriously injured from the falls. He ended up getting a Foley catheter (indwelling catheter). Obviously, no one wants to have a catheter but it took a lot of stress and fall risk away from us. Neither one of us would want to go back to living without the catheter.
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A real shitty day, literally.
