I'm tired of cooking/preparing 3 meals a day. It's just the two of us but boy oh boy can that woman eat!! She stays slimish, I get fattish. It's bad enough I do everything here much less start making her one thing and me the other. At times I feel guilty when I buy her fast food cuz of the nutritional value....not to mention I eat it too.
I have taken mum out for the day and the car park at our usual haunt is fullish so I am not hopeful of getting a disabled spot either and I do need it to get Mum out and into a wheelchair ...why am I telling you all this.... YOU LOT KNOW! In front of me is a very nice sports car open top (its a sunny day) with a young man and his girlfriend in and he turns straight into the last disabled spot. Now I am not judgemental but I waited to see if they were disabled. She got out in stonkingly high heels and I wasn't the remotest bit jealous that she was young pretty vivacious (not much I wasn't!) and clearly in love with said boyfriend ... He got out and they became entwined as he spun her round in his arms. Hmm disabled eh? SO I waited because he may or she may have had an illness or been deaf or something that would entitle them to a badge. Nope no display of required badge and off they trotted.
Now at 62 I fully recognise that I am really too old to be challenging these youngsters so full on but I was livid.....Hopped out the car all set to do some serious talking when I realised by parking where I had I was stopping someone else from getting out of the carpark....no go ahead he said this I have to watch...you look like a woman on a mission I WAS.
I ran (yes ran) over to them before they got into the store and said...excuse me you forgot to post your disabled badge on your windscreen. Do we look disabled he said grinning at his lady. Nope I said you don't but I was giving you the benefit of the doubt, you don't look disabled at all and I don't either, my mother is, however, and I need you to move your car so we can use the disability bay.
Well if he had said sorry yes and moved it all would have been well with the world. F$%k off came the reply we are only gonna be 15 minutes or so cant you effing wait?
Well no actually I couldn't wait at all and what is worse, or better, is that I now have an audience..some young, some not so much. "Well its like this either you move your car or I will let my mother pee into her pads and then I will wring it out all over your nice new leather seats and if she s%^&ts I'll rub that in them too. Because she can't effing wait you effing pair of effing selfish morons".... several gasps from an audience who clearly had not expected that out of my mouth .
I was even more incensed when they said nodded to something behind me said "Tough" and turned their backs. At this point I can feel someone very large stood right next to me and I look up sure enough its a police officer watching me screaming my head off and hurling abuse. This is when I know I am going to be in deep do do.
" I don't think madam has made herself clear sir you are required to move your vehicle now, immediately" Oh I want to marry the officer. I looked up into his eyes and he smiled at me. Don't worry ma'am yours isn't an easy job and these sorts don't make it easier do they?
I sort of stammered a lot and apologised for the language to which he replied "your daughter uses much worse" and there behind him was my lass who works for the police. She had sent him over when they clearly were going to be difficult. They moved their car to audience applause and I parked up. The company gave us a free lunch too so I have put the money into the police fund...they earned it today.
Hope you have a good day today Susan. Everyone else as well.
Katie, i do get how hard it is. People are positively dimwitted when it comes to having a clue what we do. And the stuff that is such a big deal to them is a mere toot in the wind to us.
Jeanette, I've had POA for both Mom and Dad (medical and financial) since Dad first went into the hospital and passed away 6 months later. We felt it was best, because I was moving in to take care of Mom and hopefully Dad if he came home - but he never did.
Jeanette, I left a note on your mom's obituary in the memory book, so if you see one from Michigan, that's me. Her picture was lovely.
Things are a little better yesterday. I've just stayed off FB and avoiding "liking" or commenting on anything at all. One of those "if you can't say anything nice..." situations. Better for me to just shut up.
Mom was supposed to have a cardiologist appt. this morning for a followup on her pacemaker, but we had to cancel yet again - this is the 2nd time now. She took her vitamins and instantly felt sick to her stomach (and she had eaten, so her stomach wasn't empty) - so we had to cancel again, because she didn't feel she could go. She did look very pale and ill. Her homecare nurse will be here soon, so she'll check her out.
I believe we as caregivers will emerge way stronger than all of these clueless, self indulgent people. The little problems that are big to them that they howl about we will laugh about and handle with ease after what we all have been through. Strength to us all!
Sundowning is hard on everyone around... even those not around but have the lovely gift of worry.
Susan, sweetheart, your mother is following the very same pattern as mine did. Soiled tissue in trash vs toilet, clothes backward, inside out, insisting nothing was wrong with her cutie patuey face...oh yes, even the bed, heck, she forgot how to actually lay down to get comfortable, where I laid her was where she stayed... up until the late night pacing started...
If you don't have POA right now, you'd best get it girl. I know things are just now starting to get really difficult for you, but Susan, we've spoke of this before... it does get worse. You're my age, you love your mom, you've already got plans when mom get's worse... pay ZERO attention to those on FB. God made caretakers for a reason... because we care. Give yourself a break and if you don't or can't ignore those idiots, invite them over while you take a 4 hour break. Do it.
So Susan I feel ya!
Tex, thanks for the encouragement. Once Mom is set up with a regular doctor (still getting records transferred), and has her first appointment, I am going to ask them to do a dementia evaluation. I hope that they actually talk to ME as well as Mom, because she's *excellent* at putting on a good front of being totally normal and "with it" when necessary. She does it in front of my siblings all the time, and I think they've started to think that I'm lying about how bad she is some days. One of my sisters stayed with her for a whole day last Sunday so I could visit my grandkids, and was saying how easy it was, that Mom didn't have any accidents, etc all day. I wanted to scream. Of course she didn't have accidents - that only happens when I'm there, right? Of course she was alert and talkative - she's only silent and depressed and confused when I'm there, right? Only forgets what I said 5 minutes ago and asks again (2-3 times) when I'm here, right? Only puts her clothes on wrong, puts soiled toilet paper in the trash instead of the toilet, forgets how to put on her incontinence brief, forgets how to get into bed when I'm there, right? And oh yes, it's so easy to care for her when that's ALL you are doing, my dear sister....did you forget that I also run my own business out of the home and work 40-60 hours every week? Try doing that while caring for Mom on a bad day.
I'm quite sure the doctor will find she has dementia, as long as they get some of their info from me, because there's no way that Mom is going to admit to some of the things she's been doing - because she doesn't remember doing them. I've had to step in and say something several times when the home care nurse was here asking questions, because Mom would just gloss over things and deny having any problems with showering or toileting by herself, saying she could do it all on her own - not true.
I definitely plan to call 911 for a lift assist if she falls again - I know I cannot lift her. They are really good about doing a lift assist if necessary.
I'm going to do a marathon of errand running tomorrow during the 3 hours that the respite care person is here - hair cut, drop things off at Goodwill, groceries, pick up pet food at the pet store and stop at the bank. I hope I can get it all done.
Those of us who have our lives free and are able to come and go as we please just take it so for granted. Your siblings who you say cannot help should read your last post. They would probably run for the hills.
I wish I lived close to you. I would come and give you a hand. But since I don't and I can't I'll just wish you good thoughts. Hang in there kiddo.
Any suggestions on what should be prescribed?
I have not been stopping in at late afternoons as I know his confusion is worse. Oddly enough his room has been pretty good not re-arranging too much.
I know this is part of the process but sad never the less.
I've had to shut down Facebook for a few days, save for the messages my siblings might send me, which I can receive on my phone. A relative recently placed her mother in a nursing home after a stroke and sold her mother's house, and has been posting about how much energy she has, how the last year has been like a nightmare and she feels such a weight lifted. She is planning weekends away with her girlfriends, inviting friends out to eat with her, and just going on and on about how good she feels. I'm happy for her, I truly am - that her caregiver duties have ended - but I am also getting more and more bitter with every post I see. Do I get invited out? NO, because they know I can't leave Mom without a caregiver. Do I get invited for a weekend away? NO - because again, I can't leave Mom without a caregiver and can't afford to pay one for that amount of time. If I am lucky, I can get a relative to stay with Mom for a day so I can go see my grandchildren once a month or every other month, maybe. I mean, don't get me wrong, I do appreciate whatever help I get - I really do - but it's so hard to see someone else able to get out and enjoy life when I can't - and won't be able to for who knows how long. Do I want my mother to pass away or become incapacitated so that she requires nursing home care? NO. Of course not. But at the same time, I just wish this part of life was not so hard for both of us. She is still somewhat independent, but not enough to be able to live alone. If she were alone, she would pass away quickly, because she refuses to care for herself properly. If left to her own devices, she will not shower or even wash up or brush her teeth. She will not cook, but will order food in (which limits her to pizza and subs in our small town). And then there's the financial factor. If she were alone, she could not afford to live in this house. With her income (which is much smaller now that Dad has died, leaving her only one of the two SS incomes they had together, albeit the larger one), she can afford the house payment, the utility bills and payments on her medical bills and vehicle. That's it. I pay for everything else. Food and other groceries. Her life insurance (which she never had until I moved in and started a policy - Dad had one, but she didn't - why??). Clothing. Prescripton co-pays. Incontinence briefs. Costs to repair/upgrade the house (which needs a roof this year, oh joy). Vehicle fuel and repairs/maintenance (which needs yet another repair before long). My own bills. Yet some like to say I live here rent-free - isn't that nice for me? Must be such a help to me. Right. And as little as Mom has coming in, she is still not qualified for any sort of help from the state.
My treat of the day today was lifting mom's skin folds to clean inside them while a sickening odor hit me full in the face from her skin breaking down yet again and bacteria starting to grow. (I put interdry in place in the folds, so it should be better within a few days, but it will be a daily routine for at least a week until it heals and then it will start all over again in a week or so.) There simply is no way to keep the bacteria from forming unless I keep the interdry in her folds all the time, and at $70 a box (which would last about a month if used every single day), I can't afford that, so I am combining the Interdry treament with antifungal cream and white cloths in the skin folds to absorb moisture and keep the bacteria growth at bay. I followed her to the bathroom every time she went, wiping up urine drips and puddles as I went, then making sure she didn't pull up her incontinence brief before I got there, because if she does, then she refuses to pull it back down again to check and see if it's wet and needs to be changed. (And as disabled as she is, she is FAST when she doesn't want me to do something - like make her check her brief. She'd rather wear it wet and smelly, apparently, than bother to change it.) She scratched open the small remaining scab on her incision where her pacemaker was placed, which bled like crazy because she's on a blood thinner. She looked at me with confusion when I suggested that she lay down on her bed instead of sitting on the side of it, because she was falling asleep and I didn't want her to fall (again) - I had to instruct her on how to get into bed.
Yet, she is not nursing home qualified, because she can still walk around in the house and perform most self-care tasks herself, like toileting (though she puts paper in the trash can and not the toilet and drops feces on the floor quite often), showering (which I have to help with, because she can't clean her skin folds or backside herself) and doesn't require help transferring from bed to chair, etc.
I don't know what is worse - the phase where she will be completely bedridden and require nursing home care, or this phase now, where she is still somewhat ambulatory but difficult to deal with because she requires so much care that should really be done by a nurse or CNA, but because she makes $400 too much every month, she doesn't qualify for Medicaid and because she is still ambulatory in the house, she doesn't qualify for the Medicaid Waiver program - which would pay for in-home care, and would even pay for her incontinence briefs - which are now costing me $140 a month and still don't catch everything, even if I put a doubler in them (which increases the cost even more). So I am still washing several loads of laundry a day, just not quite as many as before when she was only using incontinence pads.
I did manage to secure 3 hours per week of donation-based respite care (not a CNA or anything like that, just a companion, basically) so that I can get groceries and run a few errands. This will be the only time I get out of the house from now on unless a sibling can stay with Mom so I can visit my grandchildren for a day now and then. A visit to see my son in another state seems impossible.
Ok. Rant over. Sorry it was long and sounds like a huge self-pity party, but it's been increasingly difficult to see others going on and on about how happy they are, how they have so much energy and how great everything is for them. Am I jealous? Yes, I am - you bet. Because I know I can't change my situation - and what's worse, I *put* myself in this situation by volunteering to move in with Mom when Dad passed away. So it's not like I can voice this frustration to anyone in the family and expect to get any sympathy - all I'll get is "oh I'm sorry - that must be so hard on you. I'll pray for you." Great - thanks. I know they *can't* help any more than they already are due to their own situations, and I'm not asking them to. I'm just frustrated and having a hard time dealing with things right now. I'm sure I'll be fine by tomorrow. Just a rough day.
I'd recommend it to anyone - it can't hurt to try, and it's non-invasive and far less expensive than surgery. My health insurance covered it too, but check yours first.
Not ONE single person deserves this disease. I have drafted several letters to Senators, Congressman, Local affilitates, just basically to whomever I can get and addy to. NO ONE should die in this fashion, either find a cure or a long term fix or give those some options on HOW they wish to leave us....