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Sorry, I just read more of the above. My mother was immobile as well and around 130 lbs. when I got her, then she slowly lost weight over a year and 1/2 to about 95lbs when she passed. But i took her out of the home and she passed right here with her kids by her side. The angles told me one day (???) so I called 2 brothers and a sis and 10 minutes after everyone got her she passed!! I was shocked - actually. You helped me above Liz - cuz I too was so exhausted doing it alone and today think of all this 'stuff' I should have done with her!! We do our best. I miss her so much sometimes but feel relieved she is well, happy and safe in God's hands.
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Your one statement said: "She is very sick and would not likely do better at home." That might be your answer in a nutshell. However - Hospice and mobile doctor's will help in the home if you wanted to go that route. But if your heart / head says she is in better hands there....then maybe it's best. She might live longer with you but if she isn't any healthier or in pain would you want that for her? If you think she is ready to pass on - maybe you want to let her pass on in her home with you and family. All 'homes' are run differently. Most are short of help, and they heat it up during the day then hit the AC at night - so they can clean. Consequently everyone gets colds or worse.
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Well here we are again, this time 3 weeks after being discharged from the hospital she is sick again. My poor, sweet mom, she doesn't deserve any of this. As I left her tonight I wondered if this was it. How much can one body take? Weeks of illnesses, deteriation(sp?). I think I know the outcome but can't bring myself to admit it. I keep thinking back to when she was in my care, and I was so selfish, thinking about how burntout I was. How overwhelmed,tired,sick etc. This is so much worse. She is suffering everyday. I would do anything to go back to that time. She was aleast happy even tho I was miserable. So selfish. Iow do I cope with this? The torture? How do I go about my life when she is hurting and declining? My poor boys. I am so conflicted. Scared sick. :'(
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Brandywine and Lizard, you are suffering. You're situations have the emotional pull and turmoil that I went through also. I was (am) on my third marriage, but at least this one has lasted 28 years. The insecurity and fear of upsetting my husband (whom was uncomplaining but not very helpful) in taking care of my mother in our home was not an easy time. My son, whom loved his grandmother very much and had in the past been very, very helpful in caring for her, leaving work to help me get her up when she just sat down on the front steps coming into the house, helping me bathe her, taking her for appointments, etc., couldn't bring himself to help much anymore. I think he was too saddened by her deterioration. I felt so alone and so sad. Being overwhelmed by all of this, it was very hard to find the calm spot inside of me to know this was a normal and natural part of life, that NO ONE escapes and I was doing all I could do.
I had been "brought-up" Episcopalian, but my mother encouraged me to find what was right for me. I converted to Judaism, Catholicism and finally began reading about Buddhism. She knew about Buddhism. I only mention that because that is where I found what sounded true to me. Buddhism is not about deities or supernatural being worship, but more or less, scientific truths. The teachers are masters at helping people find comfort in the form of humanity we are stuck in.
Let me offer the following video of someone talking about loved ones sufferings. No one in Buddhism ever tries to "convert" anyone....there is nothing to convert them to! We are already human! But they sure do know a lot about compassion and reality. This teacher is Ajahn Brahm and is obviously someone from the U.K. or Austrailia or somewhere. I just found this googling "Buddhists thoughts on caretaking and aging".because I didn't know about him before. I hope it helps.
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Oh boy, Brandywine we are living the same life and my heart goes out to you. Being torn is such a horrible position to be in. I don't have any advice for you and I wish there was an easy answer. I love my Mom so much and before this last episode in the hospital she asked me not to give up on her. Heartbreaking since she is my life. Since then she has declined alot hasn't even begun Pt because she is so weak. I wonder if she will ever bouce back from this. How do we decide? Like you,I can't physically handle her because she is completely immobile. Its so hard admitting we can't help our moms anymore. I hate it. I appreciate you telling me, because it is comforting knowing someone out there understands! Thank you! And please keepin contact with me as you go thru this. You are not alone! Hugs to you!
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Lizard, your situation reminds me so much of what I am going through at this moment. I have been the sole caregiver for my 91 year old mom since she broke her hip over 4 yrs ago. Before the break, she had a little dementia, but not bad.
Since the break she has CHF, COPD, Abib, and the dementia gets constantly worse. This year she has been in the hospital three times with pneumonia, and is currently in Rehab. The facility told me today that her PT will stop tomorrow, and I am at a cross roads as to what to do. I want so much to continue to care for her but I am losing myself. With this last bout with pneumonia her kidneys failed, and they gave her only a couple of days to live. She was able to tolerate one dialysis treatment and she pulled through. The nurses at the hospital tell me one time she just won’t rally. She gets a lot of phlegm and has trouble getting it up, hence problems.
She gets weaker each time, and I am not sure I can physically take care of her any more but I also can’t put her long term in a nursing home. The place is Ok as they go, but I feel like I am letting her down. The nurses at the facility think she would be Ok for a while at home. The social workers thnk she should stay. I am trying to assess the situation myself and decide, but I am so torn. My head feel like it has a constant band around it. My boyfriend just wants me to make a cut and dry decision and gets mad when I go back and forth, but it is my mom
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Lizard, I feel your pain, as I am going though the exact same thing right now. I have cared solo for my mom, who is 92 for over four years. she is currently in Rehab after a terrible case of pneumonia. Her kidneys had failed at one point, and they gave her until the weekend to live. This is the third time in a year she has had pneumonia.
Her condition is CHF. COPD, AFib, Dementia, and she is failing. Today I learned that her PT will stop tomorrow, and Medicare will stop. They think she is to much for me to care for but her nurses think she will be fine at home.
My problem is burn out. My head feel like it has a band around it, and I am feeling guilty at the concept that i may have to make her permanent.
she can't getr phlegm up, causing the pneumonia, so i feel it will be only a matter of time before this happens again. The nurses at the hospital tell me one time she will just not rally at all- I am at a cross roads as to bring her home, or leave her in their care. the nursing home she is in for rehab is the best in the area....I just cringe at it!
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Hi Liz....My heart goes out to you, and my prayers for your Mom....I to am in a similar circumstance, My mom suffered a massive stroke almost 6 years ago,which left her right side affected, loosing her speech and confined to a wheelchair, thankfully she has her faculties.....I am her 24 hr caregiver, She lives with me, and has for the last 15 years. Now my Mother inlaw has suffered a Hip fracture and has been in a nursing home for almost 3 weeks with minimal sucess due to her severe anxiety. and OCD she also has severe Agrophobia. But the nursing home has her so doped up she cant do PT. So my husband I are considering having her her, and bring PT in for her, she feels unsafe, there, and we basically are unhappy with the Nursing home because the are not handling her issues well at all. They are just drugging her up. My poor Mother in law is just scared to death. I know they are busy, but everytime we go in the staff is all around the nursing station and no one appears to be attending to the patients who are scattered ever place alone......I had my grandmother in a fabulous nursing home for 6 years,,,,so I know there is a difference....I just need to give her the chance to get on her feet and get off the meds they have her on....Liz I know that guilt you feel...I felt it when I had to make the decision with my Nana.....but there does come a time when you have to take care of yourself, to be there for them.....Hugs
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marianne - Are nursing homes covered in your national health? I know like anywhere else the wealthier you are the more services you can command (like some of those big old Great Houses that have been converted), but how is it for the average person who must use the nursing home facilities? I for one have always wanted to know more about your national health.
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I live in England and I must stay things are improving in Nursing Homes. There is still a long way to go, but where my Mum is I know with the new Manager things are improving. Having said that, I was constantly complaining prior to the new manager and the stress was awful. Having read some of your stories in the USA I am amazed such things are happening there. Life is so unfair, we live in wealthy advanced countries, yet the care is excellent in some areas and poor in others. Legislation needs to be changed, but until someone with power and money represents this arena then we will continue to suffer.
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When I moved my Mother into a residential care home, the owner told me we would be "partners in Mother's care". So, I hold them to it. I speak up about everything because that is the way I am, and sometimes they don't like it. I am sure sometimes they--the woman owner and or her assistant-- do not answer their cell phones when I call. I don't care. I leave a direct but polite message and tell them to return my call when it is convenient. Sometimes I tell them 'no need to call back, I just want to leave a message about---'
Yesterday, I noticed dark man-thumb sized bruises on the backs of my Mother's hands. They were not there Saturday, so I asked the relief caregivers, who act like they do not understand me, which also pisses me off, but I remain polite and direct.
I watched the male caregiver as he got the guests up from their chairs for dinner. Sure enough, the first thing he did was to grab their hands--HIS THUMB ON TOP OF PATIENT'S HAND--and then when he got them to the front of chair, he grabbed ahold of their waists to lift them into the wheelchair. I know how difficult it is to move them after they quit walking. That is why I do not have my Mother here anymore. But, he did not use his legs as leverage to move the women, so the caregiver needs instruction. This morning I called the assistant and explained what I observed and made a suggestion that he/they be given better instructions on transferring patients.
The cost of this care home ranges from $3500-5000 a month, depending on "the level of care". The level of care is the same for everyone, and they tack on $250 a month when they call in hospice. My Mother has a private room, and it is a lovely bedroom with huge windows and door to outside. It is 15 minutes from my home in a nice neighborhood. I am there more often than most visitors, because I take my duty seriously, even though I would have been in the loony bin by now if she were still in our home. As it is, I have acquired several stress-related physical issues that I am dealing with--very slowly, because just like you can gain 5 pounds in a day from eating junk, it takes about a month to lose that same 5 pounds, and longer to heal from stress related maladies. I don't know why that is, but it is aggravating. My Mother and my sister did not have to do a job like this. I have many friends and associates in my life outside of here, who do not understand why life has been so difficult the last 3 years for me. One lady in my neighborhood is beginning the same life as a care giver to her narcissist Mother who abandoned her in childhood. Her Grandmother raised her, which was a good thing. When we see each other on the street, she just stares and shakes her head. Enough said.
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rct - This is the EXACT reason I have not been anxious to push mom to go into a nursing home. Unless you can afford one of those really POSH places that are like country clubs (good for you if you can) the care you can expect - at least around here - is totally inadequate, especially when one is used to a clean, warm, attractive, personal place to live. Mom witnessed this when my dad was in one for the last 3 months of his life (including getting served underdone chicken with the pinfeathers still attatched!) and she was terrified of going to one. RTC, if this country were truely as advanced as we like to think it is, or even as Christian as our polititians boast they are to get the votes ("you cannot serve two masters"), we would have had a proper national health program like every other civilized country in Europe and some of Asia instead of having the noose of the medical/industrial complex around our necks. I have even seen jokes about the cost of our medical on British TV! ("You should see what they charge for an asperin!) You are right, this country has a lot to learn about compassion for it's own.
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It surprises me, although I was painfully aware, of the lack of alternatives for our parents besides unbelieveably expensive stays in a nursing home. At hundreds and hundreds of dollars a day for sons and daughters that are forced to "dump" a parent with medicaid at a nursing home simply because of the massive nursing home lobbyists, THIS IS A MORAL OUTRAGE !
After putting my mother in a nursing home, close to our home, I was so regretful and not informed at what then happens. She was only allowed one night away a month and when they gave her cigarettes and used inhalers on her at the same time, when she was made to watch 3 roommates die in the same room, when the nurse pulled up a roommate by her hair, etc. etc. etc. Then to be told, I could not change her nursing home unless she had been in a hospital for 3 days and nights....well, this entire industry is a scam. They refused to give her milk...always watered down lemonade mix. (Helps their bottom line!)
This industry needs deparately to be cleaned up. They are heartless, ruthless criminals......now let me tell you how I really feel.
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I don't know the answer, but if she is that bad and you are that burnt out, maybe if affordable a 24 hour nurse. I know that sounds extreeme. Sometime they just get worse and there is nothing you can do. But please don't blame yourself and try not to feel guilty. Hugs
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marianne18: great story. Kind of like "a watched pot never boils". I agree with your message to DT and hope we will not have to endlessly NAG him to take care of his own health. But you know how guys are. Worse than us.
"I know the quality of my life is not normal". May I quote you? Blessings, Christina
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DT I hope all goes well with your valve op. It is interesting that you relate your fear with how your Mother faces her fear. I often think how my Mum must feel stuck in her Nursing Home and not being able to walk etc, but she does not/can't? worry about me. I am tired of fearing for everyone and yet like you, I had a health problem a few years ago and could have died as I was so busy trying to sort my parents problems out, but when I look back in my life whenever I had flu etc, I received no help from them. Having said that I will continue to torture myself with trying to get things right for them and I believe you will do the same. But for now you need to put youself first, you will have the experts working on your valve and you can then look into ways of doing some of the things that you want to do. I heard an interesting true story the other day and this is it: A daughter started looking after her frail 80 year old Mother and although she wanted to move away to the countryside she decided she would care for her Mother and do the move once her Mother goes 'home' (heaven). Time passed by and on the her Mother's 105th birthday the daughter who was 79 decided that the move to the countryside had to take place, as she felt she had waited long enough. Basically, after hearing this story I thought to myself why am I living each day as if it is my parents last day. I have been doing this for 3 years now and although I don't want to lose my parents, I know the quality of my life is not normal.
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I acknowledged to my mother that she did not need to be afraid about her memory slipping and she did not need to pressure herself to appear or seem intelligent, because I assured her she was and that I was sometimes forgetful too. I assured her I that I "am right here". She loved that. I let her know she didn't have to feel defensive (because she was a bit naturally) but that she could relax.
The mental stress of illness is as bad as the physical part. I assured her that I loved her and no matter what happened, I would have her in my thoughts always. She said she would always be with me. I told her she was the best mother in the world, and that is something every mother, spouse grandmother....whatever their role is, they want to hear because that is what weighs on their mind...."Did I do a good job?" We are such a silent and prideful society with a hard "cowboy" posture on life and in my opinion we have really messed up not being more verbal with our loved ones and friends. It's like we think we're a nation of freakin' mind-readers....which we are not. Just keep reassuring her and remember this is just the reversal in roles that we have now. They never meant to be a burden. They can't help it. I think the guilt you have is mistaken grief, grief about the inevitable. It has taken me 6 years after my mother has passed to recognize what I have is just extreme grief and missing her. I think it took me so long to recognize it as such because of family tensions that had always been present and my anger about these other family members that were never resolved that got in the way of my grieving. I don't know if that sounds familiar, but it has been true for me.
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She seems to be declining quick. She has been out of the hospital 6 days. From icu right to the nursing home. She can barely sit up. She seems worse each day. She asks whats wrong with her. She doesnt even no where she is and is very scared. I know she wants me there all the time. I feel guitly when I'm there and I feel guitly when I'm not. I'm beside myself. I talked to the charge nurse and she says she is doing ok and that her vitals r ok. But she is not ok. I'm so frusterated and scared. Sad:(
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Lizard, please don't blame yourself. Her body is at the stage where she is going to pick up any germs she comes in contact with and germs are everywhere including our homes. They occur naturally in the environment and we can't protect them from each one. He problem is her bodies ability to fight them off. That's just the way things go when they are in decline. Its natural for them to catch infection after infection, im so sorry you are going through this. Please don't blame yourself. You have done all you can do. That kind of care is to much for one person to do. Moving her is unlikely to atop the infection because there will only be new germs there.I pray for you in this difficult time. It so hard I know.
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marianne - I agree wholeheartedly with rct in that you cannot fill a void in someone's life - my mom's entire self-perception was wrapped up in her home and kitchen - she really has very little conception of what goes on in the world as long as it does not effect her narrow scope of interest (rather like looking through the wrong end of binoculars). Now that she cannot do housekeeping or cooking anymore, she mostly just sits in her chair and think of things for me to do.. Unfortunately for all concerned she always has been pretty much OCD and it tortures her not to be able to do it herself, she has many trust issues in many areas, cleanliness not being the least of it. I try to find things for her to do like cleaning and prepairing the green beans - we made an apple pie, I peeled and cored, she sliced and mixed, using her "head" recipe because she could do that sitting down, but as for as trying to get her interested in any other pastimes like reading, it is just not possible. Even while watching TV, she pays more attention to the commercials than the show (especially the obnoxious commercials - drives me nuts as I just tune them out) and cannot track the plotlines of the show at all. Movies with plots more complex than a Fred and Ginger are out of the scope. As far as 'philosophy', if you can call it that, even though she drives me nuts I guess I have a great deal of sympathy and empathy for her as I had a period of facing my own mortality several years ago, and now I have been informed by my cardiologist that I must have a valve replaced within the next 6 mondths or my own life may be considerably shortened, so I am facing my own mortality yet again, so I am understanding how frightening it must be for mom. I had a great deal or resentment (still do, I guess) at being tied down as I have many interest and places I want to go and things I want to do and have had to put them all on the back burner, hoping I will survive to be able to do they yet before I die. but for now, I have 'adjusted', that is all.
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Hi rct1220
I read your reply with great interest as it gave an excellent insight into how complex ones thoughts and behaviour can be. I would love to know the 'philosophy' that you refer to that centers on acceptance, as my experiences are similar to yours I guess, and I believe that you have found peace in your life now in which I am seeking.
Can I thank you for including the quote from professional you met who said "You can never make up for what is missing in another's life". This means alot to me as from reading this made me realise that I spent alot of time doing this for my parents and I guess I still do. I wish you well.
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Nursing homes have patient advocates and from the experience I had with my mothers nursing home, they are there to protect the nursing home from liability, not to advocate for the patient.
On the other hand, I had a professional tell me when I was much younger, "You can never make up for what is missing in another's life". Being very sensitive and knowing my mother's childhood, it was natural (unfortunately) for me to try my entire life to make up for her past. Even remembering what the professional said to me, I could not help but try to make her happy. I was brought up and made to feel that everything was my fault....so it was a toxic combination. I was 55 when my mother past. I still have very mixed feelings as to whether I did the right thing when I bought her home after a terminal diagnosis. She watched and lamented her entire life about her own mother, my grandmother, and how she didn't "buy good time" by intubating her and trying so hard to make her live after a lung cancer diagnosis.
Good luck in sorting everything out. It's hard and I have found some peace in a philosophy that centers on acceptance of the impermanance of life, thoughts and things. That same professional also said to me, "Everyone does the best they can." It just doesn't get any truer than that.
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This is such a difficult dilemma. First, I want to commend you on the love and care that you are showing and have shown your mother. Because of you, she will receive good care regardless of the location. Second, I want to suggest to you that you need help and there may be someone in your area who can help you. If your mom is in the hospital, don't hesitate to schedule an appointment with the hospital Social Worker to discuss your mom's longterm care and what your options are. If you are considering moving your mom to a different nursing home, the Social Worker should be able to give you information on the facilities available in your area which you could then visit. If you have a local Area Agency on Aging, contact them. They can provide you with information on nursing facilities or options for in-home care if you do decide to bring your mom home.
Good luck to you, and don't forget to take time to care for yourself.
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PS lizard - I have said many times that it is only too easy for others who are not personally invested in being a caregiver to shuffle off the responsability - From the postings I have read I would guess that about 90% of us who have resorted to this kind of website have exactly the same problem - as long as you Will do it, there are all of the others who will NOT! Sad but true. Blackmail may be the only answer LOL... Be Stoic.....
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You have done all the right things - you gave freely of yourself with better grace than probably I have shown, I admit. You did it at much sacrifice to yourself. Nobody could ask for more. Now it is time for the professionals to do their part in the question whether she survives or not. Agree with Carol - hospitals cannot hold themselves free of guilt when it comes to introducing new germs to the mix (you should look in the corners of our ER!... I have been very vocal about that but it never seems to improve.) considering that a personal attendant cannot stand by and sterilize every surface 24 hours a day - you could not do that either. Give yourself a break, accept the fact she has possibly reached the end of her particular journey, continue yours. My mom is 94, and though has no dimentia per se, she has not had any kind of quality of life for the last 3 - 4 years. What is worse, actually loosing them or watching them become something that looks as if they came out of Auchwitz? Mom is little more than skin and bones. Sometimes it is better to let nature decide.
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Your comments come to me at a time when I need them the most. I have been feeling very disconnected in my own miserable world, but today is a new day. My mom is doin better. Before I know it she will be discharged. Where? I'm not sure yet. Planning on talking to the social worker at the hospital today. My brothers are no help I TAKE care of everything. No only for my mom, but at. home too. Everything falls on me. My husband is at hunting camp all week, while I try to figure out everything myself. How nice not to have to worry about anything,ever. I could have never left him if he was the one hurting so bad. I never would. Jealous is the word! (sp looks wrong). Not good. And I will get past it, I always do. Thank you for thinking of me and giving me your advice. It helps. Plus it helps me not feel so alone.
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What IF.... is such an emotional and sometimes cruel delimma. It will drive you CRAZY! if it is possible to see this from another perspective, What IF, all this happened IF she was staying with YOU? then you would be blaming and questioning yourself even MORE so.... Don't Go There Friend. Anger and Blame are always the first hurdles when it comes to loosing a family member. Then the dark abyss of Remorse and Depression, Disconnection, then when comes Self Forgiveness, comes finally the Happy Memories. If you feel there is wrong, keep records, a journal, keep copies of reports, if you think malpractice is warranted, but all this may of happened inspite of anyone's efforts. No one knows for certain, and it is very hard to see a loved one suffer and feel so helpless. I've been there a few times. take a step back, deep breath, so many other people are going thru what you are, right now. don't let it make you crazy, your mom needs your love, your smiling face, and supportive words, just be there for her. -- big hug --
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Also, have you considered asking the state to do an inspection of the nursing home? It can be an anonymous complaint to the state hotline. Sounds like they may need some oversight in their housekeeping practices. Good luck!
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Hi, lizard14. What a painful situation you now face with your mother's rapidly declining health. The back and forth to ICU and the nursing home alone is surely taking a toll on both of you in different ways. Your sharing reminds me of the total powerlessness that comes with placing a loved one in a nursing home. Like you, my parent is 'my everything," and it has taken me many, many months to get to a stronger place where I can accept that the nursing home is the best place for my parent's eldercare at this time in her illness. There is nothing wrong if you don't feel that way yet. I didn't right away either. Only now, after many months of crying and missing her still, have I accepted the reality of the clinical care that she needs at this stage of her health decline. If you move your mom now, you may still have to rush her back and forth to the ICU and hospital and rehab -- and your home. Wouldn't that be much more difficult for your emotionally? There are no easy answers when health conditions are so chronic - and the saddest part is that there is not a thing you and I can do to make it any easier for her, and/or on ourselves. It is a process, and a painful one at that.
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This website but most importantly the people who responded to me are a gift from God. I can't begin to explain the gratitude I feel for your responses. Please put a smile on your face and in your heart for knowing you helped me deeply today. Forever greatful, Beth! Xoxo
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