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

So sorry for your loss. God will give you strength to get through it all. Hugs!

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!

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!

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?

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.

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.

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.

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.

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!

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.

This is to cjaharmon and to blueeyedcyn1 - You both have my deepest respect and compassion for all you are going through right now. We never get enough time with those we love. Easing their transition is hardest of all on those who have to lose a part of themselves as they help their loved ones when they need you the most. I will be thinking of all of you at this very important and special time in your lives.

cjaharmon - Having gone through hospice with my mom and the family all being there, I know how hard it is to lose your mom. My mom passed away while my sister and I were out of the room and I believe she did that on purpose so we didn't have to see her go. That has bothered me since, but the hospice workers were wonderful and made us feel they really cared and helped us work through it. Again, sorry that it sounds like it is close. I am sending wide arms for a big hug from a person who cares and has experienced it first hand. Hang in there, I am praying for your family.

So you were all right there are some very BAD hospice agencies out there. We were relieved when they came on THursday, thought we would have bed, meds, supplies on Friday. But we didn't and it was a long long weekend. I ended up taking FMLA at work and am home because mom now requires two to three people at all times, and it's getting closer to three continually. But Monday we were contacted by mom's doctor to see how the referral was going, he was furious that we weren't further and we switched hospices that day. By that afternoon hospice was there, the bed was there that night, and meds were in place that helped greatly! Tuesday the regular nurse came out and helped us more and we got some more supplies we are needing at things change and proceed. Mom has transitioned to what they refer to as the active stage of dying. Of course this can still go on for days/weeks. But her bod has started to shut down and we are faced with losing her. It's been tough but we are coming together as a family to do what is needed. I am off this week and next will depend on where things are on monday.

i appreciate the responses on the hospice. my sister was a hospice charge nurse for many years and is currently a director of nursing and is moms health rep along side dad. we need hospice not for normal support but more to work with the dr for us and get us supplies we need to be able to care for mom on our own and help with bathing as its been too hard on us to do it. we have two great hospice agencies we can use and have chosen to go with the one my sister has worked with the nurse over moms care before but arent friends. i am very comfortable with this choice

I am simply saying if you ask enough people as caregivers you will find that many have had very bad experiences with hospice. Again it depends on the hospice agency. It depends on the patient's diagnosis. It depends on the patient themselves and how they react to treatment. It depends on the charge nurse assigned to the case & in charge of the case. It depends on whether it is cancer & how advanced. It depends on whether it is alzheimer's. it depends on the value system & belief of the nurse in charge & everyone that comes to treat or care for the patient. It also depends on whether the hospice agency is just another for profit business that is not patient centered or whether that hospice agency, & the charge nurse & everyone that is front line with the patient cares about the patient. As in any hospital, any doctor, any nurse, any nursing home, any ALF it all varies. There are even different beliefs from hospice company to hospice company what there mission statement & beliefs are in which treatment paths are possible. 3 hospice agencies I have called have told me they would never allow the patient food or water if they were failed a swallow test whether they already had a g tube or not. They would also never allow a nasal camula prn with the smallest amount of oxygen or a breathing treatment. Another hospice agency (Grace Hospice) that cared for mother's roommate dc'd most all of her meds, very good thing. Even dc'd either the pain med or small psyche med the fac. had ordered, kept her less medicated & it kept her self transfer into the wheelchair so she could still eat in the dining room for every meal. Tool around the facility, still received daily breathing treatments, still had the nasal camula via the resp. therapist every night. These are 2 entirely different hospice companies, with 2 different philosophies of quality of life & 2 different charge nurses. When the patient finally died it was w/o over-medicating, w/o food & water but only for the last couple hours & up until 72 hours before deathbed she was still tooling down the hallway getting herself in & out of bed & all of this was for the lack of over-medication (pain & psyche wise) there was never any morphine administered the entire time on hospice. I truly believe having seen my mother tried to be killed on Vitas in 7 days & when it didn't take curbed to the sidewalk drug induced comatose & dumped on a SNF to end up in the ER 5 days later on medicare restrictions. The 2 were medicare hospice agencies but were worlds apart on how they cared for & about the patient. I'm just sayin. Another patient in that same facility had to switch from Vitas to Grace within the first week of hospice because as the daughter said Vitas dropped the morphine off at the nurses station & never sent any aides or nurses to help the fac. staff care for the patient. Once they switched to Grace they had dc'd that dropped off morphine & helped the patient & the facility. Again 2 diff. care paths. 2 diff. for-profit companies My mother's experience with Vitas was horrible. No coop. with family wishes or patient wishes at all.

KathleenPlano, our Hospice (sorry I don't have the name, it is in a file 150 miles away from me) -- rescued our Mom from a so-called hospital that would not give Mom even a lip-swap because of her "failure to thrive" diagnosis. Once Mom and our family agreed, Hospice took over immediately (while Mom was still in the hospital, her lips parched white, delerious) and swabbed Mom's lips, got her out of there. They taught us how to make Mom comfortable. Mom may have gone into this state because of over-medication, oh god I hope not, we didn't think of that. She was 65 lbs.(nobody knew because she wore MuMus for 15 years, Mom seemed to eat like a horse, got and ate takeout one hour before ambulance). It seemed that Hospice actually RESCUED Mom from a terribly uncomfortable death. Once the hospital signed off and Hospice took over (while she was in the hospital) -- she was allowed water, food, lip swabbing, pain medication. I can't tell you traumatic that all was. We didn't know. Now I am wondering, did we kill Mom before her time?

I was not informed about there being multiple Hospice agencies, and so went with the hospital's referral. Until I read KathleenPlano's post (4 years after Mom's Hospice-overseen death at home which my sister and I attended) -- I truly didn't know. Our Hospice nurse did indeed drop off Morphine. She explained carefully how to use it. My mother (to our horror) was 65 lbs. (well-hidden by her 10-year favored Vermont Country Store gowns) and had been diagnosed with "Failure to Thrive." She failed the "swallow test." She was a huge smoker (perhaps a pack a day), and it seemed to us the Morphine (we never exceeded the very minimal dose recommendation) was a god-send. Not only did it allow our Mother to relax enough to laugh with us as she did before her surgery for an aortal aneuryism at age 82 (she died at 89), it allowed her to somehow sparkle with delight when she woke up and looked out the house windows at the beloved oaks she first saw as a young bride of 26, after WWII, helping her husband and his Dad build that house. I hadn't seen her like that since I was maybe 8 years old (I am now 61). She had enough awareness (she had volunteered for Hospice and a crisis center) to exactly know what Hospice was. She kept winking at us in her final week. The Hospice nurse was surprised we hadn't used 90% of the morphine (I guess it is powerful). We had nurse friends tell us: If you Mom gets to where she can't breath (she had an Oxygen machine), put a lot of Morphine in her. That was our experience. We never had to. Mom's last communication with us was her famous wink. She fell asleep, and my sister noticed her breathing stopped via a baby moniter. I could not hear because I was sleeping a foot away from Mom, with the Oxygen machine going. My sis called my cell phone (next to my ear) to say, "Mom stopped breathing." I love to believe she had a good death, pain free, enjoying her brain's leadings. I have to defend Hospice, because we were always aware she may wake up in a death struggle of breath. We were always comforted by the fact we had plenty of Morphine. We felt responsible with it, and I believe, we used it wisely. The Hospice Nurse had to destroy every vial of Morphine upon Mom's death, carefully, so that it could not be used by anyone else. That time we sat with her, was incredibly calming. She had prepared Mom for the ambulance that took her to the funeral home. She was a saint, in my eyes. No, Hospice did not "do everything." They taught us as concerned caretakers how to deal with things. They did come in to bathe (Mom's skin or nerve sensitivity was such that she couldn't be touched nor moved) and change the one diaper in one week that Mom expelled (meaning she was basically shut down and didn't expel because they checked her 2X/day with us watching). I believe there are bad Hospice agencies (who wouldn't jump on that) -- but it would be the loving caretakers responsibility to ask questions and challenge the plan until they are comfortable. We did so, and we think (hope) we did the right thing. Mom never suffered. We went through two year"killed" our Mom with morphine. We found out, we did not. She truly failed. And she didn't suffer. Sometimes I think people who deny Morphine think that God's will triumphs. Personally, I think it's a combination of God's will and a God-Given Human Hand. God gave us our brains. He Is Definitely Watching. It is our responsibility to use all the gifts bestowed upon us to make our best judgements. We will ultimately be accountable for our decisions and actions. My Mom (whom I love) would probably agree, though I can no longer see her wink.

Hospice Plus is another good one but just ask all these questions. And they will as salespeople on the phone have ways of evasively bypassing honest answers. The ones that are more direct will be better ones to evaluate with. And please know that you can switch to another hospice agency much quicker & easier than being assigned a new charge nurse in the same agency as they don't wish to ruffle feathers with their staff. Just call Grace or someone else less radical hospice like with starvation techniques & get advice on how to switch to a new agency. Don't waste valuable time arguing with a current one.

As in every type of healthcare please ask every question you can think of when interviewing by phone at each agency i.e. will you allow tube feeding or will you allow nasal camulas of oxygen instead of anything more involved with oxygen support & what kind of food & beverage by mouth will you allow when they are having trouble with asperation or swallowing. Will they base what they allow on family/patient wishes entirely or will they be the unwritten rule outvoting the wishes of family reg. quality of life meaning yes let her drink don't let her die of malnutrition based on aspiration or die from dehydration against patient/family wishes. Grace Hospice is good depending on the nurse in charge of the case. Vitas Hospice is horrible & painful to work with. Many other agencies will allow the patient nothing to eat or drink by mouth ever depending on the charge nurse's orders against patient wishes or family wishes. Alot of this can be brought on by the meds given during hospice care and become an issue where it never was before. Doped up you cannot swallow as well. I don't mean to scare but my exp. was one I would never want anyone else to have. I have heard over & over to stay away from Vitas.

Hospice in my experience with my mother was a nightmare and caused her undue illness & physical suffering. It is not a positive thing for every patient & every family. It depends on what they are dying from & how long they have. I am not saying it will be bad for you, but please be aware that there are many hospice nurses in charge of the cases & many hospice agencies out there. One is not the same as the other at all. There are some very bad ones that just drop off the morphine and never come to help. Please choose carefully from agency to agency. Each one even has their own rules as to what healthcare they will allow to continue under their watch.

Hospice will be an answer to prayers! So happy they were able to help you. You will never regret their kindness and empathy for Mom and your family! Prayers are still coming!

we won a single battle in the war. Dr. Agreed to have Hospice come and evaluate since getting her out of the house to his office is so difficult. This will be a HUGE relief for our family as someone other then us girls (though trained and able) will be able to help and give bathes and such. Praise god! Thank you for the prayers!

I am 51 and losing my mom in steps and stages (she's 86)...I have good days and bad days, and you will too. Remember that you and your family are doing the best you can for your mom. Be kind to yourself because losing your mom is hard and we still have to be moms at home to our own kids while losing ours. I pray for your strength...you have lots of them coming your way.

It would seem that clearly you are in over your head and you need to consider putting her in a nursing facility where she can get the round the clock care she needs and deserves. I know you are torn but your needs and your families needs must be weighed as well. It is an unfortunate part of life but at some point if we live long enough it happens. The frequent falls and infections are indicators that she needs care that is beyond the scope of what you are qualified and prepared to deal with. This must be eating into your family resources as well. Your feelings are not ridiculous. You are mourning the loss of your mom in bits and pieces. It is time to get some outside help. You can't keep up this pace and your mom needs a level of care you are not qualified to provide on your own. God bless you.

I was able to talk to her on the phone last night (which I have been missing since she's progressed during this last few weeks). it's really difficult for her to carry a conversation face to face much of the time let alone on the phone, and her shaking is so bad she can't hold the phone. But she asked to call me last night and we spent a few minutes talking on the phone and that was good but hard. She's excited for Friday when I come spend a full day with her and I am too. I am starting to work on accepting this it's just really hard.

We all go into a sort of denial when we know we are losing our Mom. I recently lost mine, but with dementia, you really lose them twice. We did everything together and I struggled every single day. We were able to put her into memory care and even though I lived an hour away, I visited her every single day. I also had a husband with colon cancer at this time and a full time job. I don't know how I did all of it, but I do know that God gave me strength and prepared me for the worst loss I have faced. The caregiver has the worst of it all, but I also got the most smiles and I love yous! I also talked to hospice and they are truly angels to help you through this journey.

Everyone's path is different; but the emotions are the same. I miss my parents too, but what are you going to do? They NEED care. If you can't do it, you find someone who can, hopefully at a price you can afford. It keeps you awake at night, but what's the choice? I find that asking 'why' over and over just drives me even more crazy. Your mother obviously raised a caring, thoughtful and loving daughter. We're all proud of you...really; but this is the part of life, it seems, they don't teach us in school. I can't think of anyone I know who's been spared this path in one way or another. Keep talking to your friends who have been through this, ie. older friends whose parents are gone. Those were the women in whom I sought solace - the ladies who are 15-20 older than me. They really get it and can be very very helpful. Best, CK

As for wheelchairs, just go to google and enter free wheelchair in the search field
& click enter - I got a page of results. I thought I also remembered the lions club or someone like that providing them as well. I may have lions club wrong but it was that type of group.

Talking with sis really did help. She's the wise older sister, always has been and will always be that in my eyes. She's got 10 years on me, and has a lot of experience with this process. I'm so grateful for her. I just talked to momma on the phone, she couldn't really talk but she needed to hear me tonight so I talked to her and planned my visit friday.

i don't know if anything gets "better". certainly taking care of elderly parent get different. my mother died 3 yrs ago after a 5 yr stay in a nursing home. right now it's my wife's mother. 88yrs old. dementia and at least 5 other diagnosis. currently she is in a memory care unit. before this she lived with us for past 2yrs.

this journey is a journey each of us will individually take, if we live long enough. i suppose it's all part of life. what helps me on my insides is a notion of impermanence. and that this is a natural element of all life. and yes, there is grief, loss, and missing.

sometimes when i read articles about care-giving and taking care of one self as a care-giver, i think, who are they kidding. this all sounds sooo good and the correct way/method to cope. then, boom. ouch. now what to do with this emotion.

and when i can pause, stop, take a deeper breath, i begin to have a little more understanding and compassion for the elder and myself. because none of this lasts. life is uncertain. and i become a little more at ease with my own uncertainty about this life and the others around me.

this perspective is useful for me, perhaps not others. there is a natural order. and just when i think i've figured out the order, it changes. joy-pain. living the life i have been given.

and what you just posted sounds like it helped a lot to simply make the human connection with your sister. nothin beats one person talking and listening with another.

blessings
thomas