In my attempt to stay one step ahead of the wild tiger aka PSP / CBS (although I'm usually at least two steps behind), I am anticipating the next piece of equipment.
I've posted that things have been so smooth, no major declines with Sandy's health probably for about four months, just subtle minor things. Well, it just seems like things are on the move again.
I have bragged about the wonders of Sara Stedy and I still think she's the best invention known to man, but he's having more and more trouble getting in and out of the thing. It's hard to get his hips in so I can close the flaps because it's so difficult for him to stand up straight and to get centered, rather than leaning far to the right (or left sometimes). And recently he starts to sit when there's nothing but air for him to sit on, before I have him in place. His legs get so tired from standing and hanging on for just 20 seconds or so that he starts to go down. Our caregiver usually has him stand in the shower, hanging on to two grab bars for about 30 seconds just while he washes his back side. Last week, Sandy didn't last more than 10 seconds.
Sandy doesn't notice the decline. I've tried talking with him about what to do next and when to do it but he thinks he's capable of much more than he really is.
Two PT's were here last week and both suggested that we will need a Hoyer lift before too long. They have recommended the super duper Hoyer lift (an electronic one with four large posts in four corners of the room and a track running across the top). Hoyer is actually just a brand name - other makers have this sort of equipment. This will enable me to operate it by myself. The type that Medicare covers takes two to operate. I am determined not to hurt myself so I will go the extra mile or two and buy one that will keep me safe and keep Sandy at home.
These are very expensive. There must be an outlet for used durable medical equipment. I know there are a few businesses out there but it seems like their inventory is limited. People buy lots of this equipment and nobody wants to keep it around after their person is finished with it. Maybe those of us on this site should start a co-op of sorts where we can buy/sell used equipment. Even with shipping to another state (although too expensive to ship to another country), it would still save a lot of money to buy used if we knew what we were buying and especially if the person selling could offer advice on whether that's the item we really need.
And, if anyone out there can recommend a different piece of equipment than the one we're thinking of, please let me know.
Lots of gratitude and hugs to all you wonderful people out there.
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journeyofjoy
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I absolutely love your idea of the people on this forum starting a buy sell of equipment that's used. when my husband left the hospital in May I looked into getting a Sarah steady and the price was cost-prohibitive and at that point he wasn't able to use it without two or three people helping so we've tossed the idea around several times I did start looking as in the Dallas area and there were maybe two places that I was referred to but none of them panned out they weren't evidently very big and I kept getting referred to Craigslist and places like that so I am definitely interested in seeing if other people would buy into the idea
I agree it would benefit both parties if we had a Buy and sell equipment on this forum. Also try your good will store . I know here in Delaware they have a medical supply store in Wilmington . Where people donate medical equipment and they resell it .Good luck . Maria Elena
Sara Stedy retails for about $2800 (add 10% tax for Washington State). Are you in the U.S.? I was fortunate, as a dealer I know sold it to me at his cost, so I paid about $2000. I would have loved to have found a used one. At some point, I will be looking to sell this one. We also bought a hospital bed with a brand new "low air loss" mattress (the kind Hospice uses). This mattress retails for $1000. All this equipment will need a new home someday.
Incidentally, as I was typing this, my husband found three Sara Stedys on Ebay. Check them out if you still can use one. Prices are $1150, $1000, and under $900.
Let's keep talking about this. Maybe we can get some interest in setting up a system for selling/buying. There's no point in going through retailers if we don't have to. We all have way more expenses than we need at this point.
My husband felt just as Steve does. He was 'fine' - until he wasn't!
Like you, I watched the progression and plotted how to 'manage' the next step.
He was admitted to hospital when he suddenly, over a day or so (and at the weekend) was unable to hold a sitting position. His back muscles suddenly gave up!
The hoist sounds a major piece of equipment. I appreciate how you don't want to give up caring for Steve, but maybe give a thought to its cost, how fast it can be installed, and how long it might be in use.
I commend your continued fighting stance. However there comes a time when you will have to look 'relinquishing care' in the face. Maybe consider what might trigger that stage so that you are prepared.
A thought and investigation now on when Hospice and palliative care might take place may be helpful so that such a decision can be planned rather than having to be made hastily with minimal options available.
Right now you are in control and no-one will do as good a job as you are doing! Hang in there for as long as you can, but face the future and plan for when it becomes too demanding!
My battle is long over, but I feel for you and all those who continue to fight.
I love the poem. It so fits, doesn't it? I think about the future all the time. Will I be able to care for Sandy at home until the end? Or at least close to it? Right now we have caregivers 19 hours/week which is wonderful. I get out to exercise, see friends, go to bible study. Other times I am able to leave for a couple of hours to do errands and leave him home alone.
We have an appointment to be set up with Palliative Care on October 31. The neurologist recommended this several months ago but I can only do so much at once. We are just now getting to it. They will evaluate and hopefully give us some insight. When the time comes, they will refer us to Hospice.
I hope he can stay home but the last thing I would want him to do is languish in a care facility. He has a good mind and to see him trapped there would be heartbreaking. On my worst days, he still gets good care here at home. In addition, here in the states, we are looking at about $100,000/year for a care facility. So, several thousand dollars for a device that will help me care for him at home is a drop in the bucket in comparison.
I will not ruin my own health over this so I will be careful. I so appreciate your input as you have been through this. Thank goodness for those that go ahead of us and are willing to share wisdom.
Your comments about carehomes resonate with me. I had to resort to it at the end, but my love did not last long there. Not because of their care, but because he was already near the end. I was aware of the shortness of time but not the hospital dr. He was pretty useless! The care home dr on other hand was great - all I could have hoped for!
You sound like you have a good plan in place and good support. That will be a great help to you both.
I may have asked you this already..is you husband a veteran? The VA supplied almost all of the medical equipment for Dad, all the big stuff went back when he went into a nursing home.
A trick I used in the shower was a bedside commode chair with the bucket removed. Dad would sit on toilet seat and without the bucket in place his "backside" was in the clear for washing. Eventually even that didn't work and sponge bathing in bed was done.
The hoyer lift we used was a portable model that could be rolled around with Dad in the sling. Using a lift is normally recommended as a 2 person job but I did it easily solo.
The buy/sell idea of equipment is a good one. The only issue I see is the transport of said equipment.
We have one of those shower chairs but the caregiver does a better job by standing him up. He will probably be using the chair now that it's more difficult. Sandy is not a veteran so that's out.
I am being very careful not to hurt myself so not willing to operate a two-person lift by myself. I weigh 110 pounds and have a fused spine. Have already had a neck/shoulder injury that took a long time to heal so am being careful. I take good care of him but don't do any lifting.
As far as transport of equipment across the country, it would depend on how much one was saving on equipment. If you are saving over a thousand dollars and spend $200 on shipment, it would be worth it. We'll have to see how it goes. Maybe some can be helped with getting equipment.
Oh,Soo sad......my heart breaks for the both of you., for me and my sweet husband who cares for me - for all of us who struggle so each day.. I didn't marry until I was 59. I am today 69 years of age. On the 21st of November I will be 70.. My Scott is 12 years younger. My disease has taken over our lives. My son, Christopher Taylor, whom I adopted 25 years ago - as a single mom (I was 45 years old) graduates. Nursing School the middle of December.. These two splendid young men are the reason I live, I have a much sadness about my marriage,.we have had 10 years,. I have been gravely ill for 4 of them. Scott read your post, said to me,. " this is how it is".. Thanks for sharing so much. I am holding you in my heart and sending prayers of love and peace ~
I am sorry to hear of your situation also. We've been at this long enough that it doesn't seem heartbreaking most of the time - it's just the reality. I was just in there getting him into bed and we stopped to talk and joke about whether getting in and out of the Sara Stedy is really what it's all about - like the hokey pokey (if you remember that childhood song). If I would have known a few years ago what was ahead of us, it would have been frightening and heartbreaking. And I know that at some point, this will definitely be heartbreaking. I think the hardest part is still ahead of us. Most of our days are spent just doing what is necessary for his survival. I think he may have 2-3 years still but God only knows. Some days he looks very tired.
It's so nice you have a good marriage (and good that Scott is younger). Ten years is not long but so thankful you have each other. And, that your son is graduating nursing school. Good for him! It's so nice you get to see this.
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Adventures of Georgepa part3
Stress the destroyer.
