Not knowing how to stand.

Good morning everyone hope y’all are safe and well.

So I’ve been having to tell my husband how to stand. When I transfer him from wheelchair to bed or vice versa. I will tell him bend your knees and plant your feet. He does it for a second and then puts his legs out straight and crosses his ankles. I have a bar by his bed that he can hold onto that helps me do I can get him up. He doesn’t seem to know what to do. Is this the beginning of him being bed bound? Is there something that I can do to help him more?

Thanks for trying to help me understand this horrible disease.

[honjen43]

Hi Penny, yes it could be - but it could still be some time off!I found my hubby got stuck in the bath after a lovely soak in Pinetarsol to ease his itches. His brain seemed to have 'lost the plot' and I had to direct his every movement, as well as putting a towel under his chest to help him lift himself up and get him out.

It seems as if the brain has a block that stops the message half way to the action generation.

I suggest you talk to his physio and see if you can get him onto a regular programme of movement, particularly the ones that cause confusion.

Keeping him moving may be a big help in the longterm. He will probably listen more to the physio than to you, too!

Hugs

Jen xx

[Hidden in reply to honjen43]

Thanks our physical therapist does come any more. I’ll check to see if they can start again.

[JCRy]

Hello, Penny. Being bedbound doesn't have to be the beginning of the end. When it was clear Ian needed help moving to and from bed, we used a Sara Stedy (actually a cheaper version)...google it. It gave him a good 6-8 months before a hoist was necessary, and he was able to enjoy that time. Fortunately his arms remained fairly strong to pull himself up.Hope this helps.

Stay strong...and positive. We are here for you.

Much love,

Juliet

[Heady]

Steve always seem to forget how to do movements. So we regularly had lessons. I would very slowly make the movement myself, then went through the routine with him, using simple buzz words. It’s takes time and patience, but it bought us closer together and helped me work out what he could/couldn’t do.Sending big hug and much love

Lots of love

Anne

[AJK2001]

We had times when legs wouldn't do what they were meant to, or Mum would have a terrible lean to one side but it always sorted itself out in a day or two. Mum was never bed bound, so it's not necessarily inevitable.

[Debspottery1]

My husband also getting stuck- freezing while getting out of bed or chair, sometimes standing. It sometimes helps to ask him to move in the opposite direction with his body - because he tends to want to lean left, and so we gently try to rock him to the right. Other times I will just rub or massage the leg or arm that won't cooperate, while we talk about what he intends to do. He has a hospital bed with side guards, and I keep a solid chair near the bed with arms that he can lean on while I hook his arm under mine and give him a lift boost. I ordered a hoyer lift - which is covered under our Medicare plan, because I know we will soon need it as the legs lose strength. It requires two people and some space, but will be necessary for transition. The leg muscles cramp up and it's painful- so I massage with essential oils, and also use a tens unit, which helps temporarily. I've also tried a foot and leg massager, and hand held massager which vibrates at various strengths to help blood flow, and a foot bath. I made my own warming heat packs with rice and some fabric like a long stuffed pillow - you microwave a couple of minutes to heat up and then place it wherever the cramping is. I add lavender for soothing. Take care not to strain your own back while helping.

At this stage, I will try anything I can find to give comfort as going to PT or doctor is rather useless. Some of these items can be found gently used online or in thrift shops.

[Polygon]

Hello Penny, We use a gait belt to transfer from wheelchair to walker and then onto the bed. A reminder to keep feet apart and transfer weight to legs is sadly needed every single time. Since there is a constant tendency to fall back, a gentle push forward and down near the upper back seems to make the transfer a little easier (it does take a toll on my shoulders/elbow so not sure this is suitable for everyone). We have avoided the permanent "bed-bound' situation for now.Take care. Hugs to you.

[Stephanielayell82]

We have used a lazy susan that you would normally use for kitchen items on table or countertops. And put no slip cabinet liners to put feet on so they won't slip off wood. And we use that to turn my love one on transfer as her feet wouldn't allow her to turn. When picking on make sure it's a solid piece of wood and thick that the lazy susan is made of. She was about 175 pounds when we stared using them a couple of year ago. And the transfer are faster and easier. They also make medical disk to help with it.

[Martina_MP]

I have found that my mom can’t really follow or learn physical instructions, even when it’s a routine daily movement, so we have to cue her each time and guide her hands or feet into place each time. It’s one of the maddening features of the disease.

[Ange57 in reply to Martina_MP]

I have the same problem with my wife Ang57 , takes two or three repeats for an instruction to sink in but it doesn’t last same things over and over. Drives me nuts but heh ho it is what it is. Good luck.