I’m having one of those “half-empty” days. Didn’t start out that way. I was excited because Lynn was having his Tram delivered today and I knew he would be happy to have that. The Tram is a device we bought to help him stand and perhaps even walk one day so it’s a “hopeful” device based on our faith that he will be able to do more in line with walking, in time.
However, he woke up not feeling well from his Rebif shot last night. When he doesn’t feel well, my day becomes devoted to his constant need for attention. I needed today to catch up on work I was behind in from my job. I count on having some dedicated time on Saturday and Sunday to make up for the time I have to spend caring for him during the week. Well, it’s now 7:30 p.m. and I’ve given up the hope that I’ll get to do any work. I realized I was depressed and feeling overwhelmed so I decided to talk to you all because I know you understand. In other words, you’ve “been there, done that.”
I get so discouraged sometimes. Lynn wants me to be all things at all times and I get so tired of trying to keep up with it all. For example, he has an itch that needs to be scratched so he calls me to come to scratch his leg. I get there and he looks at me expectedly as if I should know what itches so I go through the twenty-questions routine to narrow it down. “Which leg, top or bottom, nearer the foot or thigh, inner or outer side,” until finally, I get an idea of where the itch is. Then I scratch wondering if I’m coming close and when I can stop. He expects me to instinctually just know what he needs.
A few minutes later, “Donna, come fix my patch.” Lynn has a pressure ulcer on his buttock I’ve been treating and covering with a foam-type patch. It’s large enough that it pulls on his skin hair at times or sometimes the problem is the air bladders in his seat cushion that press against it and make it hurts. Whatever the problem, he expects me to make it better. He looks at me imploringly to say, “make it stop hurting” and I fiddle around under his leg, lifting it up, smoothing out the wrinkles, padding down the sharp points that come from under-inflated air bladders to see if “it makes it all better.” Sometimes it works right away; other times I work and work to make it all better. When it’s the last scenario, I feel like crying in frustration before I’m released by him to go back to whatever job I was trying to do before he called me for help.
When I’m not magically trying to fix pain and discomfort, then I’m acting a psychologist. This week he got depressed because he had a visitor who choose to tell him about two people she knew with MS who had serious complications or whom the disease had devastated. One of them died and the other is bed-ridden and in a lot of pain all the time. After she left, Lynn, in exasperation asked, “why do people do that? Why would anyone tell someone with a chronic health condition about someone with the same condition that was doing much worse than they are? Can’t they understand that I don’t want to hear about how “bad” I could get? It’s hard enough to keep a positive attitude and keep fighting this thing without someone trying to bring me down with stories of how others lost their battle.” After that visit, he was irritable and easily annoyed for a while so he needed a lot of attention.
A new challenge lies ahead for me. Lynn now has his Tram which could lead the way to a lot of progress OR it could result in a lot of disappointment and frustration if his condition won’t allow him to stand with support. However, who is going to be the one to help him with his goal of walking? I am of course. Insurance cut out his home visits for Physical Therapy. They might approve outpatient visits but honestly, if I had to take him in for PT every day, I might as well give up my job now. It takes a minimum of three hours to get him and me ready if we are going somewhere or having someone come to us; then there’s thirty minutes or up to an hour to drive to wherever we’re going. Therefore, to save time, I’ll have to become his PT. I already help him every morning to change weights, apply straps, adjust positioning, hold equipment, etc. while he works out. I’ll be adding to that assistance withstanding. He will need to increase his endurance by standing longer at a time so I’ll have to be close by meaning–more time away from my paying job.
Everything he asks me to do he needs to have done for optimum health. Everything he asks me to do though takes time from all the house maintenance, car maintenance, shopping, cleaning, food preparation, personal hygiene, job duties, making appointments, etc. He REALLY needs a full-time assistant but our bills are significant enough that I couldn’t carve out that much money to have someone full-time–and in-home care is not covered by insurance. I feel like I’m working twenty-four hours a day; seven days a week. I haven’t had a day away from him that wasn’t related to my going to work since Eli was born and I stayed at the hospital all day/night with Sarah and Greg waiting for his arrival. That was May 27. Before that, I had a shopping day in October looking for a dress to wear to my nephew’s wedding. That’s the only time I have been away for several hours unrelated to work in a year.
I’m tired. I’m discouraged. I need sleep. I need to get away…..but I need to go give him his shower, fix dinner, get things ready for his family who is coming to our house for an after-Christmas gathering tomorrow, and meet his many requests for assistance till I fall into bed around 2:00 a.m. tonight. Oh well, life goes on…
PS: Don’t worry about me. I’m just using you to regenerate myself. Thanks for allowing me to share my feelings with you. I can’t do that with Lynn; it would hurt him too much. I’ll be fine. I’ll see my grandson tomorrow for a few minutes and the world will be smiles and coos again.
Thanks for listening.
Donna,
I totally understand your frustration. My husband has MS as well and the caregiving is all-consuming. I hire HHC workers thru Care.com. It has really been a life saver
Thanks for sharing that, Kelly. I have not heard of Care.com. I’ll check it out. Thanks
I too have used care.com, some good and some bad. Donna insurance does pay for respid care. Look into it,you are a wonderful, wife and caregiver , but as I learned through therapy I do have the right for a little life of my own and through that I take better care of Tom. We all get it good luck
Thanks Robbi. You are such a wonderful support for me as well.
I can relate so well to you. My husband has MS and in the last 2 years has been unable to stand or move himself, so that leaves me to do it. We live in a rural area so care.com doesn’t have anyone in our area and it’s hard to find someone to help due to the personal nature of his needs, ie: showering, dressing, pressure sore on his buttocks, catheter, and colostomy, not to mention the costs involved. When I read your posts, then it makes me not feel so overwhelmed and depressed. Thanks for sharing, it does help.
Thanks for sharing. I just went to check out their web site not realizing it was like “SitterCity” which is a service similiar in nature in our area. I had tried getting someone from that group and the only person who answered based on all the needs he had was someone who would have had to drive 40 miles both ways…not a good option so I’ll just keep taking it one day at a time, as I’m sure you do as well. It really does help to connect with people like you. Thanks for reminding me as so many others have, that I’m not alone.
I tried to be Bill’s therapist after his outpatient therapy was discontinued because Medicare would no longer pay for it if he wasn’t making any progress. His occupational therapist gave us some exercises, and I created a makeshift standing frame by supporting him against a wall. However, he couldn’t stand like that for more than a minute, and he soon gave up on that and the exercises. Maybe I should have pushed him, told him if he wouldn’t try to stand and maybe walk, I would have to send him back to the nursing home, but that would have been a cruel lie. Now that he’s in a better place, it’s too late to wonder about that.
By the way, doesn’t Lynn qualify for Medicaid? They cover in-home care, at least in Wyoming. Check it out.
He has medicare but not medicaid. For medicaid, you can’t have more than $2000 in savings and we don’t like to be that short because he has so many needs come up that just would not be covered by medicaid that we have to be prepared for it. Medicare only covers immediately after hospital discharge and my work insurance doesnt cover at all except for post-hospitalization or for home care for pressure ulcers or short term issues. I really do not see any support for people who are middle class and have some income but not an over-abundance. Not even respite care. Most of that is also based on need since resources are so limited and so many people need it.
I’m so sorry. I wish I could do more than offer a virtual shoulder to cry on.
I don’t know why I didn’t think of this yesterday. Bill had the same issue with Medicaid. He couldn’t have resources over two thousand dollars, and there was a limit on property and vehicle ownership, but here’s how I worked around that. I opened a savings account in my name only and transferred money to it from our checking account once a month. Since the savings account was at the same bank as the checking account, I could easily withdraw funds from it when necessary. The only time I had to worry about the amount in our checking account being over the resource limit was once a year when I had to send a current bank statement along with other information to the Department of Family Services so they could check to be sure he still qualified. When I bought our house and a van with a wheelchair lift, I put them in my name only. I hope this is helpful, and I hope you can find a way for Lynn to qualify for Medicaid. Frankly, I don’t know what we would have done without the in-home and respite care services Medicaid covered for Bill.
Great blog! Hopefully 2013 will be the year for the cure for those afflicted (like my sister Cate) with MS. Please visit my blog: http://www.mslife.lifesparknetwork.com and share your story! We would love that!
Marianne and Ellen
I was just checking out your site. I would be interested in subscribing but didn’t see a way to sign up. Did I miss it? Also, I’ll add you to my blog roll. Your site has some excellent information. Thanks for contacting me.
Donna
Have you ever sat down with an attorney (someone who specializes in geriatrics/disability)? I think you have many more options than you realize as far as setting up a supplemental trust for Lynn, moving assets into your name (or placing the house in trust). It would be one more thing for you to do, I know, but I think it would be worth it. I am so grateful we did it.
No I haven’t. I admit, I’m afraid to go because I don’t understand this sort of thing very well and I’m afraid I’ll make the wrong decision. I know it’s probably something I really need to do but I have to work my way into it. Thanks for the suggestion though. It gives me something to check out and I didn’t think there was really an option.
Donna, I was scared, too; I’m downright allergic to taking care of things like this. But the good thing is, the law, in this area, is so cut and dried. You are allowed to do X only if Y. You are allowed to do Y only if Z…you get the picture. I think the trick is to look for an attorney who specializes in geriatrics/disability, and to look at the big picture (in other words, explore all scenarios). I had no idea that there were so many options open to people in positions like ours.