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Spouse or Partner Caregiver Forum
Hello John -- Thank you for thinking of me -- I am definitely not OK, bad back injury after being pulled down by my husband as he went into a hypoglycemic faint. Here is what I posted on Nov 21 when Rescue Mom wondered where I was.
Dear Rescue Mom -- Thank you for remembering me. I have been barely surviving after my husband collapsed, taking me down with him, due to a hypoglycemic attack in late October. He is type 2 diabetes and was on heavy duty oral medications because his A1c (blood sugar readings) were rising. But at the same time he was losing a lot of weight and no one made the connection, least of all me. I am one to do what the MDs say and this never occurred to me.
So late summer he had a few of these strange very short moments where his legs would collapse and I was always able to get him to a chair -- he recovered quickly and passed the stroke test (FAST--google it). But late October it happened again after one of his midnight guided trips to the loo and I didn't support him adequately in time -- he fell and pulled me down with him. As before he recovered quickly -- but since I had only minimal teaching demands the next day I decided to drive him after midnight to the ER, where they found his blood sugar at 44 which is basically comatose. They cut back on his aggressive diabetic medications and this has not happened again.
What has happened is that I have a disastrous back injury. I am in physical therapy but am reliant on heavy opioids to finish teaching through December and have come to understand that I am not just at risk but that I am damaged. I have a mat to awake me, painfully, every two hours or so when he has to get up and pee. I have to take him to the bathroom, which he cannot find on his own, so I get very bad and interrupted sleep. I remember the times before I was living with this level of pain, when I thought I really could deal with it all. I still hope that, as they allege, my back should feel better in a few months. But my confidence in what I can do going forward is heavily damaged.
I actually went to look at a nearby care facility, and have decided I cannot face the idea of leaving him anywhere while I am still able, however marginally, to keep him at home. Once he doesn't recognize us, that will be different, but I have been literally sick to my stomach about the idea of leaving him anywhere while he knows anything. The weird thing is that having to get up and lecture has been my salvation. I have to take these pills to do it, but I feel basically no pain while teaching. I realize this may not be sustainable over time and I am very frightened about the coming year. Thank you for asking, Rescue Mom.
So John -- thank you for missing me -- it means a lot. I am something of a wreck and have never had so much pain in my life, including two knee replacements. Luckily I have only two weeks left of Fall Quarter then the rest of December to recover. My husband is more and more of a zombie. He paces and pees -- that's about what's left of his life. The peeing has to be supervised as he cannot find the bathroom and doesn't remember what the toilet is for. The worst part for me is getting up all night with the chime from the mat when he gets out of bed despite my stabbing back pain. I have to argue with my PCP for pain pills and have seriously considered driving to a well known drug street to get more pain relief -- but when push comes to shove (so to speak : ) I don't want my name in the paper.
My husband has literally taken me down with him and I have to accept that fact and hang in there until he actually destroys what's left of me, not that I have the energy to really care much -- my life as I knew it has been over for quite a while now. I pity him, and I don't think his life is worth living at this point -- there is literally nothing there -- really nothing. I am also starting to resent him and what he is doing to me. But of course, it's not his fault, it's the disease, so suck it up, etc etc ad nauseam.
There is no reason why you cannot place your husband temporarily til you recover + that is what I would recommend.
Also, I am attaching an NPR segment re: help with chronic pain that I would look into before I would consider taking more opioids.
I'm really sorry for what you are going through . Your husband may not be ready for placement anywhere but You are. I would suggest getting help in to the home. You wouldn't be lying to say it's for you. Use the time to get some sleep, sleep deprivation is torture without being in pain. You have to do something for yourself right now, don't worry about what he is ready for.
I would look into the article that was sent to you about Naltrexone, it sounds like a good idea. Also there are urine pitchers for men used in hospitals. I would get one, I would also get a portable toilet put in the bedroom. They can be purchased anywhere from 100-1000 dollars. Not the most elegant of solutions BUT you cant be lifting or supporting him when your back is already injured.
I'm seriously worried about you right now. I'm not where you are right now but since we live in an old house I' m thinking I may need to get a custome made walker because all our doors are less that 36inches wide. Maybe a walker would help you as well. Wishing you luck, take care of yourself. Tami
McCott I am so sorry. Being in pain like that, and your LO can’t help and in fact makes it worse, is The. Worst. The opioid hysteria now has made it hard for people with real need to get help that quite often IS the best for them. Now legit patients are suffering because of grandstanding pols....but I digress.
Do be aware that street drugs are now often cut with other substances/chemicals that truly can kill you—that’s what accounts for most ODs we hear now (along with mixing booze and heroin in vast amounts). It’s NOT Rx pain relief causing the big problem, but CPPs suffer because of others.
I hope you can relief from some source, somewhere, sometime. I miss you. What’s happening to you is awful. I wish I could fix it.
I beg to differ Terei. There IS a reason why I cannot and will not take your advice -- it costs an arm and a leg -- $450/day for so-called respite care at a nearby facility, the only one with respite within a half hour drive of my house. It is not worth it to me to take on more debt just for a night's sleep.
I will survive in some form or other, but I am not adding the expense and the emotional trauma this would cause to the can of worms I am in. My husband is traumatized every time I leave the house, tries to follow me out to the car. Being separated from me would be the worst thing I could do to him, and I will not institutionalize him until he doesn't recognize me.
As for opioids, I will take whatever the doctors will give me. Some people here seem to assume that anyone who takes a pain pill for any reason is some kind of addict. It is annoying to be lectured for seeking pain relief after an accident like the one my husband inflicted on me last month. I suppose I should just accept pain on level 7-8 out of 10 as the just reward for accumulated sins of a lifetime.
On that note I will crawl back into my hole and leave you to your condescending pet theories. But let me say one basic thing, one more time -- the only way to deal with an ALZ diagnosis is to commit suicide while still able and before ruining multiple other lives. I know a lot of people agree with me on this, even people who don't like me.
It is clear you are in terrible mental + physical pain + I am sorry I added to it by giving you suggestions you did not ask for.
As far as your final two sentences, I couldn’t agree more.
My instinct is to try to help; to make your burdens lighter, but that’s not possible. I’m just so sorry this is happening to you in particular and to all of us generally.
I hope that I never get this disease, but like you I have an exit strategy.
Absolutely everything I do and say is to keep DW happy and/or stable. There’s no more humor or give and take. The loving and generous woman I love has become completely egocentric. Not her fault, but painful to witness 24/7.
Today was the first time she seemed to forget my name. She was telling her dad a story and referred to me as, “him, that guy” as she pointed to me.
I digress. Thanks for responding to my post. Take all the pain meds necessary and do pt exercises. I hope you survive this and have happiness in the future.