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

I took Mum to her old house today which she enjoys. As we were leaving I saw some of her favorite flowers were in bloom so I picked her a few, like I did as a child. When I gave them to her she said "these stink". Hmm can't do anything right some days I think. I get her into the car and as we drive off we see her neighbour and her little dog go by, when they approach the flowers the dog lifts it's leg and waters them, like it is it's regular spot. So Mum was right all along, they really did stink!
Hugs to everyone who is struggling at the moment, more than usual.

Susan - Has she applied for the extra help in paying for Medicare Part D? Sorry but some people do not realize it is a separate help which covers the yearly deductable and helps lower the co-pay for each prescription. Most prescriptions end up costing at most just a few dollars. You don't get the help without applying for it.

CM you brought tears to my eyes. not because you are having to get rid of Mum's things but because you are having to give up the home that you clearly love and held such promise when it was purchased, even if it was "the worst day of Mum's life" Sure daughter #2 will squark about her stuff. We are supposed to keep their rooms as shrines and storage facilities. She will get over it faster than you do but still hold you accountable. that's life you are #1 now. hugs oh and G&T

I do wish drs would think before prescribing these super expensive newer anti coagulants. Sure it is convenient for the patient, one pill a day and no routine blood tests, and no dietery restrictions. What could be better? The downside is that these drugs have NO WAY OF BEING REVERSED if the patient has a big bleed for any reason.
Susan your mom needs an anticoagulant because of her Afib and the recent episode which could have been a stroke. Comadin (warfarin) costs me $2 a month with my medicare PPO plan. it is on Walmarts $4 pharmacy formulary. Yes there is a downside. The blood has to be tested at least once a month. it is going to be difficult or possibly impossible for you to get Mom to a lab for blood tests but it is probably likely that a visiting nurse can be arranged to visit your home. The test is just a finger stick like a diabetic test so no hassle with mom being upset with having a blood draw although this can be needed if the figures are too high which is rarely the case. It is possible for the testing supplies to be ordered and you instructed on how to do it. The result is called to the drs office and you are instructed in any changes in the dose of the medication. Vit K is the antidote for warfarin which would be given by a nurse probably in the ER if Mom had a bleeding accident. there are restriction on eating green veg especially leafy greens but that too can be managed as long as the same amount is eaten each day. You can vary the type so no big deal. I have been on warfarin for 2 years now and do go to the clinic each month which is only ten minutes and I still drive myself. Well worth the money saved! I am going to request home testing as my PCG is moving to a clinic further away but at this point have watched them do it often enough i am confident i can follow the instructions. Have not done it sooner as my PCG had been out on maternity leave. She will remain in the same medical group so no problems transferring records

Shilo, unfortunately, the $285 a month IS with Medicare Part D. :-(

Jessie I have no experience with Remeron so had to do a search. Looking at the side effects it certainly sounds as though her obsessive behaviour could be due to the drug. I am sure you will have a fight with her over stopping it, she sounds as though she is as high as a kite and enjoying every minute of it. if it was given for depression there are plenty of alternatives that could be prescribed.

Oh heck I staued away for an evening and all hell breaks loose!

Susan get her a teddy bear - or at least try her with one....mum sleeps so much better now she has something to cuddle of a night. Im not saying it WILL work but it helped Muim and at that stage anything is worth a try

JB get a meds review - she may be on the wrong dosage and to be honest if you get the right doc he/she will prescribe a placebo if there is an issue. Unfortunately OCD is typical in dementia as they become focused on one particular thing and it can drive you up the wall - Mums particular bent atthe moment is the fridge and her handbag. Having found all manner of things in the fridge that dont belong there - socks for example - I then thought I could smell something weird in the lounge. Checked commode nope - checked the bed - nope even checked her depends nothing. I mist have looked like a bloodhound going round on my hands and knees sniffing but finally in her handbag a pack of opened smoked bacon and some chorizo with a lump of cheese and some broken cream crackers ......now all in bin since they were stuck to some half chewed mints....hey ho!

No, she isn't on B12, but it could be a good idea. Her last B12 was a touch low -- not worrisome, but a boost may be helpful. I just hope that we can get her off this Remeron stepwise without a major fight. I understand that she likes the energy, but she doesn't realize that her behavior isn't rational. There are some socks and underwear that have yellowed with age (my father's, I believe). She has washed them three times that I know of. They are now soaking overnight in Clorox water, so she can wash them again tomorrow.

She chastised me tonight for not depositing the cleaned coins in the bank yet. There aren't enough to make a reasonable deposit. There are barely enough to cover the amount of cleaners that were used and the gas to get to the bank and back.

If we could channel these obsessions to doing something useful, it might not be so bad.

JB - Is she taking B12? If not, you could suggest she start taking that for energy. My mother takes it to help improve her mood, suggested by a neurologist. My aunt takes it to help her with her balance. I guess like most medicine, Remeron may work well for some people but is not meant for everyone. My mother had a bad reaction to Remeron which increased her blood pressure enough for a heart monitor to be used. Once she was taken off the drug her blood pressure stabilized. So I am not a fan of the drug either.

I called the nurse a geri psych nurse. That was wrong. He is a general psych nurse practitioner.

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.