Lift/Track system is next piece of equipment.

[journeyofjoy]

Sara Stedy has been increasingly more difficult for Sandy to use. It's hard for him to straighten up enough to fit into the device. And his legs are so weak and get tired so easily that I'm afraid he's going to fall down or not be able to get into it. I was ready to call 911 last week when he couldn't get off the toilet. His body is so rigid and is getting worse just recently. Last night when I lifted his legs onto the bed, I swear they were 40 pound weights stuck to the floor.

So, after much thought I've decided to have a track system installed on the bedroom ceiling with an electronic lift. This will enable me to move him without help, and without injuring myself. I will be able to move him anywhere in the room - to commode, to wheelchair, to bed. I've recently had an old injury flare up and I have to let it heal. I think it's from getting him in/out of Sara Stedy, lifting his legs off the floor, up, down, up down etc. A couple of weeks ago I thought I was being proactive by purchasing this in advance of his need for it. Now I feel like he needs it as soon as possible!!

It's actually an extreme measure but the alternatives are either a care home or having caregivers come in many more hours each week. Does anyone have a system like this? Or if anyone has any ideas up their sleeves that I haven't thought of, please weigh in.

Having a tired day. Thankful for all you good people out there.

Joy

[Hidden]

You are going through the mill. It is relentless. I never got the the hoist stage. Other may have something to say.

[journeyofjoy in reply to Hidden]

Yes. Always a new phase. How are you holding up?

[Hidden in reply to journeyofjoy]

Well enough. I have the oddest feeling I am not alone. I don’t know if it is because I am in an environment we shared for 21 years surrounded by his things or he didn’t leave. I don’t have that empty alone feeling I expected.

[journeyofjoy in reply to Hidden]

I'm so glad you are feeling comfort and peace. I have lost loved ones but have never experienced or witnessed this type of caregiving situation up close. Enjoy the peaceful moments, cry when it comes. Grief is necessary and it's different for everyone. Someone once told me when my mother was passing, "grief is relentless, don't try to avoid it because it will not go away, you have to go through it." Remembering the happy times before the dreadful disease is good and also part of grief. Do you have family close? Will you have a memorial service? Personal questions, I know.

I just recently started thinking about our happy times, when my husband had some weight on his body, was driving his Porsche that he loved, enjoyed wine, family and friends, liked going places, reached out for me when we passed in the kitchen. It's been long enough now that I had put those times out of my mind. I am not going to miss this disease and the way it's taken over but I will miss those happier times.

He still enjoys a very small glass of red, and family and friends so that's good.

[Hidden in reply to journeyofjoy]

I am not doing any memorial service. That would be too sad. I have lived through grief before. It is hard. I am not unaware of the down days. I am better prepared for it this time around.

I am close to Larry’s cousin Diane who is close by. Our neighbors are watching out for me. Then there is this site that has been a source of information, a place to vent and to grieve. I am not going anywhere soon.

[enjoysalud in reply to Hidden]

I'm glad

[kenh1]

If you have the money I would say go for it. You want to do the best for him as I'm sure he would do the best for you. Only one caveat make sure you take care of your own health. I went down the road of having extra carers in because my own health would not have been able to manage the extra care. Best wishes. Ken

[journeyofjoy in reply to kenh1]

Yes, we're going to do it. And he would do it for me. I was doing really well, finally getting out to exercise, etc. The last couple of weeks have taken their toll. I think Sandy's additional rigidity has hurt me. This device will help and I will have increased caregiver hours as needed. I want to have my health when we are finished with this journey.

[enjoysalud in reply to journeyofjoy]

Please remember to re-read this paragraph with "The last couple of weeks have taken their toll." Increased hours of caretakers is GOOD. Good for the two of you. YOUR HEALTH is important to both of you.

Los Angeles, CA, USA

[journeyofjoy in reply to enjoysalud]

Thank you. Right now the 19 hours/week is enough. Will reevaluate as time goes on. I wish we had some time to be a couple. All of our time is spent just caretaking, doing things that are necessary for his survival. We do have some laughs along the way though.

[Dadshelper]

I have used this system before in a medical facility while helping a nurse. It is a great system to use. I don't like playing devil's advocate but before you have it installed please consider the long term future.

We all know anything done in regards to home modifications will eventually be not needed. I don't know the cost of this system but in addition to that will be the eventual removal of it. It has be installed permanently to withstand the load and movement safely so removing it will involve repairing wherever it's attached. The resale of the system will probably be pennies on the dollar since it is such a niche device.

I would look into a portable/wheeled lift system to see if it would work for you. I used one with Dad for almost a year and it was fine.

Just my 2 cents.....

Ron

[journeyofjoy in reply to Dadshelper]

Ron,

Thank you for your reply. Your considerations are all good and I have considered all of them. Apparently this one ($13,000 total) is even less expensive than a 4-post track system where you have a post in all four corners of the room. The reason for this complex system is that they tell me I can do it by myself, without risk of injury. I weigh 110 pounds and do not want to injure myself (I already have an injury that recently flared). My husband is only 150 pounds. but I can't even move him two inches to adjust him in bed. He is so rigid that it's like trying to move a concrete statue. It will also enable me to move him anywhere in the room and adjust him once he's in bed. Please tell me more about the device similar to this that you saw in person.

If I bring in extra caregivers to help me move him throughout the day, that cost would far surpass the cost of this device. And the cost of this is a drop in the bucket compared to a nursing facility.

Please let me know if I've missed something. I've carefully considered this but am certainly open to more information.

As of this evening, things have changed. I am going to put this in a separate post so others can reply if they have information.

Thanks again for caring. I don't know what I'd do without this community.

[Dadshelper in reply to journeyofjoy]

The one I helped use, one time, was a ceiling mounted one. It had rails snaking around the room to various points that would be needed like, bed, toilet, chair, open area for wheelchair. It seemed to be simple to operate with forward/reverse and up/down controls. In the middle was a hmm hub (think railroad roundhouse) that allowed you to change from one rail to another. I believe that was operated by the handset controller also.

Ron

[Marilyn_cbd12 in reply to journeyofjoy]

Journey, I apologize if I am repeating a question or information already posed, but will Medicare cover some part of this? Local Parkinson's or other support group may have some information about resources. Physical therapists are often good sources on these purchases. I understand why you are moving toward the track system, but it is a significant expense. I think that you are in the U.S. so offer reminder that this should be tax deductible. Just to be sure, can you get a physician to write script for it? Then it would be a rock-solid medical deduction if you itemize.

Marilyn

[journeyofjoy in reply to Marilyn_cbd12]

Marilyn, thank you for replying. I don't think Medicare will help out with this. I will call them today. Yes, it'll be tax deductible.

It's a significant expense, for sure. I'm a number cruncher so I've weighed this out comparing it with greatly increased caregiver hours or nursing home expenses. It's still makes the most financial sense plus I can keep my husband at home where he'll be much happier.

[Bianca]

We used to love the Sara Steady, and used a safety belt that came with it. But as hubby became more rigid and tended to incline towards one side, it was no longer practicable. Also his legs became contractured after a one-month hospital stay, and he became bed bound soon after. So, we did not even switch to the hoist that we also had, and instead attended to him in bed, including sponging, using diapers, exercising/turning him in bed etc.

Guess you’d have to make a decision based on what is more practical for both of you and your own health as well.

[journeyofjoy in reply to Bianca]

The situation with your hubby sounds like mine. If Sandy was toward the end, I could see him being bed bound with his needs taken care of in bed - but he seems pretty good to me. We may have a long time yet. No way to know at this point.

[Bianca]

Glad Sandy is still in quite good condition, so he could still be moved with the right equipment, that will not be taxing on your own health. You seemed to have considered and researched this well, and in a position to make the best decision under the circumstances. All the best!

[journeyofjoy in reply to Bianca]

Hello Bianca,

It's so hard to judge what's happening right in our own home to our loved one. I think he's doing okay because we adjust to the new set of symptoms. His body just seems to get more crooked all the time.

How is your husband doing?

[Bianca]

Yes, indeed, it is so difficult, but we do adjust as the symptoms developed. My husband passed away a month ago, after 11 years with PSP. Thankful that he is safe in Jesus’ arms right now. 💗✝️

[Mamacass58]

We plan on getting something like a Hoyer lift so we don't have to put anything into the ceiling. Something like a Sit-to-Stand which has a harness you put around them and they are lifted up using an electric hoist. I was considering a Sara Steady, but David's legs are also getting weaker and his feet aren't moving very well. Our PCA uses a Sit-to-Stand at the Care Facility and said it works well. David was just accepted for Medicaid and they will pay for a hospital bed and the Hoyer-type lift.