Not sure what I need, but feeling lost. Does it get better?

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i really don't know what I need or why I am exactly writing this but I am feeling so lost I need to do something. The last five years has been really rough with my mom. She has continually struggled with health and has had a steady decline over the last year or so. Five years ago my mom had a surgery that about took her from us...i will never forget the ICU code call and the sternal rub that she didn't respond to. since then my mom has become a shell of herself, she has moderate dementia, can only take care of her own ADL's with assist most often then not, falls continually (multiple falls a day sometimes, and at least two or more a week). we've been to the ER three or four times this year for various infections, and found out she has TIA's in march, and she had another surgery in July to clear her sinus cavity of the impaction that we found out after the fact was actually a staph infection. since the diagnosis of her TIA's we have come to realize that she probably has them a lot more often then we think, and has had them for a long time. She ended up in a rehab for 20 days in September, but since coming home has only went down hill more. Since coming home in October the doctors have said that there is nothing else they can do for the TIA's, they can't figure out where the clots come from or what causes them. They don't know why her health is failing in general, why she is falling, or anything else other then to say that her body is starting to fail her in general.

We've had the discussions as a family to plan for next steps, and to talk about what to do if mom were to have a serious stroke. I struggle with all of these discussions, and though overall i agree with the decisions I really struggle with losing my mom. I have lost parts of her so long ago i feel foolish missing what we had, but I miss her. I don't know what I need but I need to feel better, or learn to cope with all this without going crazy. I work in a high stress job and have two high schoolers and stay incredibly busy keeping up with them. Most of the time I feel like I am just one slip from losing my mind and everything in life. Is this normal? does it get better? any ideas how to cope and live with this all!?

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So sorry for your loss. God will give you strength to get through it all. Hugs!
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CJA ... condolences on your loss, and congratulations on your 'soft' transition .. it sounds as if you and your sisters are joining together and making it a family affair. I wish you gentleness and as much serenity as you can find, as you move through the next phases. Blessings.

Reddog .. you may want to add incontinence pads to the nighttime diaper. The major thing to remember and consider: when she's wet, especially overnight (and if she's losing sensation that she IS wet), the risk of bedsores increase. There are many ways to alleviate this risk including frequent turnings/position shifts, more frequent changes of the diaper, liquid/creme barriers and adding a variable pressure air mattress to the bed (our personal lifesaver .. Edna doesn't *move*, at all, at night, so the mattress allows us to sleep at night, knowing she's never quite in the same position). And, yeah .. some days are great and others make you feel like you're dealing with a completely different person. Edna vacillates from knowing where she is to wanting to go home .. while she's sitting in the living room of the home she's had for 30 years. Dementia is a devil.

Hang in there, and let us know how it goes!
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CJA-
I am so sorry for your loss. And it is wonderful that you and your sisters were able to work together! Your mom must have been so proud of her girls!
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Thanks LadeeC...I talked to a friend of mine that had moved out of town that used to be a nurse and her mom use to run a convalescent hospital...she told me some of the same things you did. I had already thought about cutting her fleece tops up the back but she also suggested doing the same with the warm pajama bottoms...split from waist band to crotch, and can either tab them together in the back or leave it alone with a blanket in the wheel chair to cover her. I have used the gait belt to get her in and out of the shower for a long time but had not thought about using it to turn her? I have the folded transfer sheet under her when she's in bed with a water proof pad between that and the sheet...tried having it under her and she managed to shove it in the floor and still pee all over the bed...I use the maximum pullups but they just don't hold enough to get her through the night...the ones I ordered through a medical supply place are supposed to be the heaviest duty they make. Had already ordered her some larger tops...she didn't like that...still has enough vanity for about a dozen women...the ones she had were like trying to get a sausage out of its casing. I keep her in the heavy fleece pajamas in the winter and she still has a sweat jacket over them...she's still cold and I run around in a sleeveless top sweating because the house is so warm. I'm calling her doctor tomorrow to see if we can get a hospital bed for her that Medicare will pay for. That would make everything easier...just having her in a twin bed would be easier. I will also take your suggestion and see if we can get some kind of visiting nurse to show me the tricks of the trade. Thanks again...there has to be a way to make this work for all of us...at least she is good natured about the whole thing, that is a blessing that I am well aware of. This morning she was kind of giggling while I was rolling her around trying to get her dressed. Some days she remembers things and sometimes she wants to know where her room is?
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Reddog .. they make hospital gowns for a good reason: they're easy access, easy to put on and take off. We've gotten several nightgowns from a thrift store and simply cut it up the back and added ties (some we don't even go that far .. just cut a slit up the back, so it doesn't get wet, in case she's incontinent). If you don't want to have her in a nightie all day, get clothes several sizes bigger, as you don't have to fight immovable limbs in a tight shirt/pants.

Pull up briefs can still work, but it takes a lot of rolling and turning to get them on. Better yet, find the ones with velcro-like tabs (I personally prefer the 'fitted tabbed' versions, which I actually cut up the sides. The unfitted versions just don't FIT right and always bunch in the wrong places). I get almost all of ours at CVS, where the prices are actually cheaper than if I ordered them in bulk.

If you have access to getting home health to come and teach you techniques, DO it! All kinds of back-saving tricks, like keeping a pad under her, and use IT to help you with the turns (you grab the pad and pull/lift to make her turn/roll over). As for lifting and moving, see if you can find a 'gait belt' .. it wraps around the middle and gives you leverage for lifting/transferring. If you don't have access to Home Health instructions, there are a number of really good videos on YouTube.

Good luck and let us know how it goes for you.
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Still muddling through all this myself with my mother n law...She has gone from being able to at least stand to transfer from her bed to wheel chair to being dead weight. It's like trying to move a 140 pound sack of potatoes without bruising any of them. The pull up depends are not working now, I have ordered the maximum diapers for her but am trying to figure out the easiest type of clothing to get off and on her. She likes the fleece pajamas I bought her but trying to get those up or down now is like a wrestling match. This has all happened in the last 4 days so we are doing catch up on how to take care of her in this new capacity. I bought the body wash and shampoo that does not have to be rinsed and am calling her doctor tomorrow to see what has to be done to get Medicare to pay for a hospital bed and probably a lift too. right now I have her in a fleece pullover shirt and a pull up diaper with one blanket behind her and one wrapped around her lap in a wheelchair...any suggestions that would make this easier would be appreciated.
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WOW! You have had so many changes to go through. If I can recommend anything it is to get enough rest and good nutrition. I cannot begin to imagine your stress level or feelings of loss. Very sorry to hear that your family has sustained such a heart aching loss so suddenly. We never know.
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i guess there is an end to this. after a 5 year battle of various health issues, and a quick decline from september till now mom passed very peacedfull with all three of her girls holding onto her on friday morning. she had us all back home for one week, many slumber parties, and she kept us on our toes thats for sure. now a new kind of feeling starts as we prepare for calling/viewing today and celebration of life tomorrow. a new worry comes to the front too will dad be ok. she has been his life for more then to 50 years between dating and marriage. and of course a lot of sadness. though her pains gone i still miss her and dont know that will change. thank you for the support the last two weeks never dreamed this was going to go so fast when i posted this we were planning for months of me spending three nights helping and my sisters doing four. just never dreamed it would be 13 days but when the kidneys stop its fast and its a wild ride.
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Gabbygirl: STOP RIGHT NOW! You are being USED, HAD, ABUSED. Your mother is far too young to dump all her responsibilities on you! It will NEVER get better. She will only get worse!!!!! I have lived this lie through my narcissistic mother-in-law who clawed her way into our home and life until she was 98. If I thought it was bad when she was 60, it was way past terrible when she was in her 90s. GET OUT NOW! See a therapist to see why you are vulnerable to being played. I warned you. If you choose to ignore this truth it will BITE YOU IN THE ASS! Good luck!
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I too feel where you are coming from. Its amazingly similar, although not quite as bad for me. I often feel the same way, wondering if its ever going to get better anytime soon (this decade?). My mother is only 61. I'm not even 40 and I feel like I've aged twenty years. I'm trying to balance a busy professional career with playing rescuer to my mom for her myriad of health and personal problems. She has a husband who isn't helping her at home even though he's been laid off for three years and refuses to find other work. Their home is a complete disaster and health hazard in itself. Her credit is ruined, the house is nearing foreclosure and she's left it up to me to find a way to dig her out of her marriage and financial mess. She's stopped seeing her therapist and unloads her unhappiness on me every time I see her and begs me to save her from her misery all while tell me what a wonderful daughter I am and how special her time with me is. So I spend hours trying to find apartments she can afford on her disability income. She can't drive so I take her on her errands. When I visit I spend hours taking her from one store to another. I've spent thousands on groceries, cell phone bill, a storage unit so she can move out, and various other thing that she says she 'needs' but the husband won't get her (including Ensure which the doctor recommended). She doesn't have dementia, but sometimes I feel like I'm raising a 60 yr old teenager. I tell her she can't smoke while she's on the patch to stop smoking and she pouts. She already has Emphysema. I tell her to wait on getting yet another hobby (sewing, gardening, jewelry making, collecting, and painting I think is plenty) until she moves and she pouts. I tell her she can't drive until the doctor says its safe for her to drive again, and she pouts. "They didn't take my license away so I can drive if I want to". I feel like we've switched roles. I'm the parent and she's the child. I'm the therapist and she's my patient. I'm the social worker, the caregiver, the mediator and sometimes (more times than I'd like) the convenient scapegoat to her husband so he doesn't yell at her. And then I feel guilty for feeling angry about all this. Because this is what a "good" daughter does. She takes care of her disabled mother. I want her to be happy and I can see she isn't well. She's only barely back to walking with a cane after her heart attack. She's lost 40 lbs in 6 months. I don't know if the weight loss is medical in nature or if its because she refuses to eat anything the husband fixes her out of spite. It too is very overwhelming that its all on my shoulders.

My husband is very understanding and supportive. I don't have children (unless you count Mom). My sister who lives half way across the country says this is all sucking my soul out. That I'm not the same person. I used to be vibrant and ambitious and happy. Now I'm not any of those things. I'm thinking about how to overcome all the problems. Once I slay one dragon, there's five more waiting for around the corner. Even if I do find the magical place that will suit my mother's budget, there will be a long waiting list, and even after she moves, I fear I will spend the next 20 years, watching her decline in health with her Emphysema to a tiny shell, spending weekends taking care of her and then eventually full time. Spending thousands to pay for her divorce and, lets face it, my own therapy. That's where my imagination takes me as to what my future holds. A little bit scary.

Sorry for unloading myself, but like the original post, I wonder if it will ever get better.
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