My "whine moment today." What's yours?

I need some learned ears, because I think we may have created a monster here. My mother has been taking Remeron for about a month now. She has become very obsessive. I believe it could be hypomania. I talked on the group about her days washing coins. She used all the cleaners she could find and worked for three days to get the coins cleaned. Since then she has taken on other projects. The past week she has been washing clothes all day. She has gone into her hoarded clothes room and thrown a mountain of clothes on the floor. She is soaking things in Clorox and washing things that no one will ever wear. She is blazing through detergent, fabric softener, and Clorox like crazy. I try to get her to stop, but I can't.

I talked to her tonight about cutting back and eliminating the new medication, because she said she was having trouble sleeping. I asked if she felt agitated. She said she felt like she had a lot of energy and she was enjoying it. And she was not going to stop taking the drug.

I have no idea how to handle this really. I wish we had never started this stupid drug. She needs to come off of it, because her energy is being directed into activities that make no sense. But how to discontinue the Remeron without sending her into crash and burn. I don't have any faith in her geri psych nurse practitioner. He doesn't seem to get old people at all. He lost her files and still hasn't billed her insurance for her appointments. And he won't talk to her. He talks to me instead -- I don't like that at all. I wanted to take her off the Remeron when we had the last appointment, but he wanted her to stay on longer. Now we have this coin and old clothes washing going on and a woman who is enjoying it. I've heard that hypomania can be enjoyable, but it is driving the caregiver cuckoo.

Susan - Does she have or would she qualify for the medicare prescription drug plan part D? My mother takes Eliquis (blood thinner) which costs $1077 for a 90 day supply. Since she has Medicare Part D and receives help her cost is $0. I am grateful to have the prescription help.

I see some serious headphone days ahead.....

Yes, $10 PER PILL. Thank God she only takes it once a day. A-Fib is being treated, pacemaker is in place, and follow-up appointments are being scheduled. The problem is that I kicked her old doctor to the curb and still don't have a new doctor in place due to the hassle of getting her records transferred, so I might have some issues with getting the Xarelto changed to something else, so I might have to nickle and dime it until we can get Medicaid approved or something.

She's happy to be home, but restless as heck and it's driving me a little batty. Might just be all the stress of the day, though - but her cricket routine is about to send me right out of the room. Good Lord, she just will not lay still. She dozes for 10 minutes and then pops back up and asks what time it is, saying she must have slept for a while - uh...no, Mom. 10 minutes. She talked of getting a bell to wake me at night when she has to go to the bathroom....I was dreading this part of the process, and now here it is. And leaving her in the nursing home another 10 days wasn't going to change the fact that she is steadily declining, and the decline has been accelerated by recent events - for whatever reason, it's moving faster now.

I'll be honest, if things continue the way this first night is going, I don't see her being home for long. I suspect this is going to go downhill fast. Taking care of me is a nagging thought in the back of my mind, but to be honest, I can't do much of that until I can find a way to get a caregiver in here to take my place so I can take a break now and then. It's already a problem - I can no longer leave her alone AT ALL, so a quick run to the grocery store or whatever is no longer an option.

Gulp. Ten dollars a day, more or less? They've got you over a barrel with that, really, haven't they. So are they treating her for A Fib or what?

Well, home at last! I hope she's meek and appreciative having caused so much trouble? (you don't need to take that question seriously!) But at least I hope she is happy to be home, and will soon be feeing a lot more comfortable.

Meanwhile, to harp on the old theme, how will you be taking care of you???

CM, it was kind of a nightmare.

Mom was supposed to be discharged either tomorrow or Monday. Of course, when they told her that at the NH, she pushed for tomorrow - and once she thought she could get out tomorrow vs. Monday, there was no getting her to stay longer. So they set up a home evaluation with physical therapy for today. I went to pick her up in our handicap-accessible van, and we (a therapist and I) got her into the back of the van on the lift, and then into one of the rear seats in the van. Success! No, not so fast. The seat belt in the back seat is (unbelievably) about 3" shorter than the seatbelt in the front seat where she normally sits. No amount of tugging or pulling will make it longer, and even with the seatbelt extender from the front seat, it will not fit. We even tried hooking two extenders together - wouldn't work, because they're not meant to be hoooked together for safety reasons and will not latch if hooked to one another. Mom is not strong enough to lift her body weight into the front seat anymore, so we had to admit defeat. Back inside the NH - Mom was really unhappy about that - and making decisions to try and do the home visit next week instead - and possibly have the local patient equipment company transport Mom to the house . Then we find out the company doesn't run on Saturdays or Sundays, and unless we pay a taxi company to pick her up (paying an outrageous sum for a trip that was all of 5 small-town blocks - about a quarter of a mile), she will have to wait until Monday - no, Tuesday - because Monday is a holiday - to come home. Nothing doing. No way was she waiting now that she had been told she could come home sooner. So I told them that since the only hurdle to her coming home was the home therapy visit, which we'd already decided to do next week since she couldn't be transported in our van, and since the transport company doesn't run after today until Tuesday, then why not just discharge her today, since everything was already done? So that's what they did.

One unpleasant surprise was when they called in her prescriptions and her Xarelto (blood thinner) is $285 for a 30 day supply. Yes, we will be trying to get her on Medicaid, because there's no way I can pay for that - and she *definitely* can't.

Susan beware of putting the cart before the horse - I think it's a question of investigating what caused the falls. Actually, going back a bit, I think you know that, don't you? - her doctor was giving you that blather about "falling asleep" and you were having none of it…

Worst case scenario: if she should turn out to have had a little stroke, it'll take her a while but she will get over it. You just need hawk-like vigilance to make sure she doesn't have another - pester all her doctors all you like. I'll bet she is glad to be home, yes? Only don't despair if she's still pretty labile.

Plus you get to take full charge of her diet! Doctors' orders…

Wow, Susan! - one of those lightning discharges in the end, then? The "oh some time next week no wait this afternoon" types? Well, at least now you can get to grips with what's going on with her. Hope you hadn't made any plans for the weekend???

My whine moment is this whole family including myself. Instead of allowing me to call for assistance last month they want to do things their way that requires my and brother's help. There's a painting project for the outside of the house, and recruiting a neighbor to do that and the lawn. It seems so simple, like I should be grateful, but I'm trully not because their is only the "tip" being taken care of. My brother came over to do a few chores and talked with both parents, I was already a bit sluggish and tired after having to change dad at 3am. So sleep was so-so. Then I have to interact with everyone (interaction exhausts me sometimes). Me and mom are dressed to go out and get the painting supplies. Before we do, I'm recruited to check the garage for any old paint to use ( i knew there was none). Then check the trimmer to see if it works. Then double check the list because mom didn't want to take the trip anymore in the future. Then add something else...etc. What about the? It's already on the list dad. Oh.. What about? I already mentioned that... Then we drive out there. I follow the list and she watches the cart. I inquire about the paints, shade, where's the ?... Oh i need to grab this. Walking back and forth while my energy slowly depletes and the world becomes unreal. Then we make it to the garden center. Get what we need. Then get the paint cloth. Let's have lunch. Paid for lunch and had a decent stress free time. Then the salt headache hits and the mood shifts. I shuffle to Target and get the few items, and relieved go home. Then I prepare to take brother home. Oh play the lottery... Sigh... Make a very headache somber drive to his home, say goodbye. Dodge giant holes, then make it to the local station to play those same tired no win numbers burning funds. Oh well... A tired drive home with a little headache creeping back up. Heat across the head, allergies begging to get it on. Arrive home, feed dad, close those blinds. I head up to my room...darn forgot the water...Finally some rest.....What's that smell?...oh....that time again... Did you? Not finished yet...oh my head... The headache...the smell the headache... I want to laugh at it all, but cry instead...whine instead. Whine...Atleast it will get better before bed. Many aching hours left in this beautiful day.

I will be having mom evaluated by a neurologist and ..not sure who else. Her memory and dementia issues are profoundly worse since the fall and heart issue / hospitalization / nursing home stay. I'm hoping the neurologist can address that or tell me who to have her seen by to deal with it. I am waiting a bit to see if this is trauma related, or if the trauma itself actually caused an uptick in the symptoms, which can happen - all the doctors and nurses have told me this is not uncommon. Mild dementia becomes far more pronounced after anesthetic, trauma or a hospital stay sometimes - and Mom had all 3. God help me if she ends up having to go back to the hospital or nursing home for any reason. I still think bringing her home was the best thing for her at this point, and I hope she will settle down once she's home for a few days. I know I won't be getting much sleep, because she's afraid to get up and walk without someone nearby, even though she has a walker. Her restlessness is incredible.

CM - if you can, save a few small tokens from Mom - a hankie, some jewelry, maybe a few little knick-knacks or trinkets - and make a shadowbox of memories.

Mom is home, for better or for worse.

I have two sacks of good warm overcoats and shoes and boots for the Salvation Army. The rest of it is now in big bags to go to the recycling centre tomorrow. Bags and bags and bags of it. I had a wobble over her favourite nightie but then reminded myself that I have a favourite nightie of my own, thank you, and don't need to be welling up every time I think of her being tucked up in hers if I keep it. I'll feel better once it's all gone, it's just the feeling of chucking her out that's hard to get over.

Early next week, I hope, the Book Man is coming to take away the books (we live conveniently close to Hay-on-Wye, the world capital of second hand and antiquarian booksellers). That won't be so hard because I will be distracted from grieving over mother by Daughter 2's howls of protest: she's coming home tomorrow for the mid-term break, what she doesn't yet know is that her ?500-strong collection is in the firing line too. I love books. We have too many. Mine are still in boxes because there was nowhere to put them when we moved here. We are trying to sell the house, and wherever I go next it's not going to be somewhere that can accommodate an entire library. So there has to be a bloodbath… Time to rediscover my heart of stone.

CM leave things like that for the time being. Just put em in a box as Jude suggested and deal with them when you are able. Hugs

Right CM time to make a decision do you want or need to keep them? If not bag em up gal If you need to keep them then go and buy a pretty box from that swedish company that has furniture put the clothes in it with a lavender sachet and tuckit away in your wardrobe hun. that way you have the best of both - her stuff and you not seeing it xxxxx

Big snivelly whine coming up: the clothes - the nighties and bed jackets and hankies with her name embroidered on the corner - are doing me in. I'm not even sure this counts as a caregiver's whine, either. "After sales" whine?

Same with mine, Jude - worked just well enough to stop her going into a complete tail-spin of misery. Not that I expected them to turn her into Pollyanna.

CM you.re not being the Trump of Doom hun Mum has depression and the antidepressants make her much better - well much better than she is without them lets say

Susan what concerns me is that the tearfulness and panic she seems to be expressing could be something new going on. If TIAs and heart issues are on the agenda, so could acute depression be - and if that turns out to be true she's not going to cheer up just because she's home. I know I'm sounding like the Trump of Doom, apologies, but this might be a different kettle of fish from longstanding personality issues. You can get away with low dose SSRIs even if you have heart disease, I know; but isn't she seeing a neurologist? - I think there are better alternatives, why not ask what he'd recommend?

Thanks all - Mom is set up already with home PT and a homecare nurse for a few weeks to get her going in the right direction. I honestly think the depression and confusion will be somewhat alleviated by being home - the confusion is going to be ongoing, I think, but I don't think it will be as bad, because she'll be home. Her confusion revolves right now around "when can I go home" and "how are the animals" - so once she's home, those two issues will be resolved. We'll see what happens. Found out Medicare will *not* pay for her incontinence briefs (finally found some that fit - YES!!), so that's on me - oh well - it was nice to at least *think* about having some spare money for a while, and I know they won't pay for a caregiver, but I am investigating other resources. If we can get her approved for Medicaid due to her huge medical bills, there may be some options with the waiver program.

Susan, the nursing home might make recommendations for home PT and perhaps also someone to help out with bathing etc. for a little while. If they don't, you could ask about this. Sometimes the same agency they use will cover all those people for a few weeks.....
My Mom is doing somewhat better today for what it's worth for the mention, the delirium seems to have lifted and she is not agitated this morning. What a relief. I am always afraid that she gets so scared seeing people that are not there and might try to get out of her wheelchair or bed when this happens and she cannot stand or walk and break something. Day at a time.

Susan I dont know whether its an option but could you engage someone for just a few days when she initially comes home to take the brunt of the burden from you even if it was only to handle mornings getting her up washed dressed breakfast and sitting with her - then at least you would feel more able to cope than I fear you will if you dont get help hun xxxxxxxhuge hugs sweety

Susan are you able to monitor Mom's B/P etc when she is at home. If you can't do that it is best to let her stay a little longer. Will you be able to get her to do the exercises when she is at home on the days the PT does not come. She is very demanding when she is away is this likely to continue once she gets home. have you talked to the staff about the crying? Does she do it all the time or just when you are there or on the phone? Can you try going once a day one day and see how she does. I would go in the evening and tell her you won't be able to come the next morning. that way you can comfort her before bedtime and not leave her upset. so many patients seem to think they will be better once they get home and fixate on that but it often just does not happen. Think about it.
it is a pain running back and forth but at least you can get some work done which is essential. Could you do that with someone pitifully demanding attention the whole time. I know you love her and feel she will be better at home. It may make her feel better as few enjoy hospitals and N/H especially when they need a lot of help and like to eat when they want to not when meals are served.
50 years ago hospitals served early morning tea, breakfast, mid morning coffee, Lunch, afternoon tea, dinner and a late night milk drink in the UK so you never had to wait till 8-30 for breakfast when the nurses started vitals and meds at 5 am.

Thanks CM - she's never been diagnosed with depression, but due to our family situation, I suspect she's lived with it for years - probably decades. When she is home, she is relatively fine, but goes through highs and lows. At this point, I just want to get her back home and leveled out on the new med regimen due to her recent heart issues before we jump into anything else.

Susan, remind me, is your mother actually being treated for depression? If it hasn't been considered before I think it would be a good idea if it was now. This may not be anything much to do with her being away from home; it could be a new symptom in the wake of her recent falls or more specifically whatever caused those. I agree about totting up the stress involved when you compare having her at home with running back and forth to the NH and fielding miserable calls in between, but how are you going to manage work if she's at home and still crying? Just a heads-up, I don't mean to depress you further. If you do think her overall treatment warrants a thorough review, I'd let the NH keep her for the full allowance simply to give them more time to do it.

Mom is quite possibly coming home on Saturday. I appreciate the thoughts and advice not to let her come home early, but when you're on the phone with her every day listening to her sob, knowing that she could probably make it at home, it's a tough row to hoe. She was only about 9 days away from her release date, and had made huge progress in therapy with her walking, and they will release her to come home with some therapy here in the house, so it's all good. I didn't get diddly squat done today as far as housework, because my work for my clients was crazy busy, but I'm headed off to bed shortly and will get up early and tackle it.

Trust me, the selfish part of me would like her to stay there so I can get a break, but how much of a break is it, really, when I have to be up there every morning and evening to visit her so she doesn't get too depressed, and spend the rest of the time working? At least if she's home, I'm not running back and for the to the NH..and she can get the same therapy help here she's getting there, and she'll be happier and not calling me crying and depressed.

Susan - You are so wonderful. Pls don't bring mom home early. This is one of few Respites you will get. I've had 8 wks off in 5 yrs; due to hospital & rehab stays. She's being well-cared for and it's temporary. It's not like you're leaving her in a dungeon. Just tell her, she needs to get stronger for a safe return to home & her release date will be here before she knows it. Mention that you need some time to get the house ready to accommodate her new needs so she'll be comfortable.

Katie that sounds just like a UTI - the docs told me it is almost impossible to prevent them. A lot are caused by faecal matter getting into the urinary tract and if your mum gets loose periodically then even if you clean her thoroughly you can still find that there is some trace left. Wiping from front to back is fine when I do it but if mum gets her hands in there anything could happen sadly so dont beat yourself up, don't be scared it is a phase she is going to go through again and again and while it is easy for me to say because I am not going through it right now (it was my turn three weeks ago) it does get better xxxxxx chin up you

I am so scared today...Mom is showing signs of delirium again where she is agitated, seeing things, and clawing at the air. She was fine a week ago...even a few days ago. The doctor in the rehab nh. saw her today and did prescribe an additional antibiotic. All her vitals are fine and there is no sepsis. They think it is from the UTI..... This is the 4th time in the last year of this type of intense delirium and it scares me to no end. She can get pretty agitated and I had to stop her from knocking over a table. It comes on and then lasts 2-3 days...then she sleeps for a day and goes back to normal. This is sheer hell and I am terrified it won't stop one of these times. I don't know how I am going to get any rest at all tonite..I feel like crying my eyes out but will try to remain calm knowing she has nurses looking after her.

Susan, just make sure that you keep telling your Mom that she will be coming home, that it is only temporary and that everyone is just getting ready for her to return home.

Thanks ladies - went to see mom this morning and talked with the PT folks and got the ball rolling there. They will talk with the social worker and then make recommendations for discharge to the doctor and so on. They want to come and do a home evaluation tomorrow with Mom here so they can see how she functions inside the home - the hard part is that she will have to go back to the NH after the evaluation, and I expect that's going to be a rough patch for both of us.

Have to hop off here now - work is really busy this week and now I need to make sure the house is ready for tomorrow.