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RULE NUMBER 1. Never ever assume your loved one is being looked after properly in a Nursing Home. It is this type of apathy to allow poor care and nursing hone atrocities in some homes to continue. It might be nice to assume and keep your head in the sand - but for God Sakes be their advocate. I shutter whenever |I hear someone assume the care homes are the best place to be
I'm replying to Betty (jgbg98) even though it is a question from a couple of years ago. I went through this with my husband through his cancer. It metastasized to brain tumors, so we dealt with cognitive issues as well. I cared for him at home to the last day with home hospice because I promised he would pass away at home. In our situation, if we did it again, he would spend the last month or more in an inpatient hospice or skilled care. The general belief is that having home hospice adds quality time, which quite the reverse occurred. I was too busy with personal care and exhaustion that we lived and breathed his illness without quality time to reminisce about other subjects. He would have been much cleaner around the clock with having nurses and assistants on duty 24/7. I had to catch a cat nap now and then and spend a good hour cleaning him upon waking.
Several years ago, a short time before I retired to take care of my parents, I was talking with a pharmacist in our company who was a friend as well as a very astute person. When I mentioned trying to take care of my parents myself, as opposed to nursing home care, he said plainly "They're professionals--you're not". Although I was able to take care of my father for a few months, the situation changed and it became apparent this was the best advice, and an attempt to take care of my mother, with my sister's help, lasted about a month until we looked at each other and agreed as to what we had to do. Neither of us has regretted it.
Put my 91 year old mother in a nursing home last month. I feel sick to my stomach with worry. I visit with her every day, but I wish I could do more for her. I do not feel right about this and I want to retire early in order to bring her back home so that I may care for her my self. I feel miserable!
My 88 year old mother was happy when throughout her life she was given compliments and told she sang and dressed beautifully. She was not interested in being helpful while I raised my children, mostly self-centered and giddy when men paid attention to her. She is now falling when walking, she has memory issues, and cannot take care of herself, I found a lovely NH for her, she has told me she will run away if I put her there, She tells me I took all of her freedom away from her and put her in prison. She wants all of my time and care. I found the best place I could for her with residents that are lucid and friendly. I DON'T FEEL ANY GUILT.... FIND THE BEST FIT FOR YOU LOVED ONE AND QUIT BEATING YOURSELF UP...
My mother takes care of my grandmother. Granny is 90. She has MD can't see well, weak. Basically lays all day But she is up all night, calling out for my mom or others, I mean all night my mother gets no sleep. I mean none. The calling out is now happening all day. Any advice? My mom is Lori g her mind. And the guilt is preventing her to put her in a care facility. I know my granny would not want my mother's life to stop, and it has.
I'll try... Even though she's not my relative (boyfriend's mother) and even though she's manipulative and hard to please, and even though I should not be in this position, I feel extremely sad and guilty for putting her in a nursing home (NH). She says she wants to go, because she has no alternatives (I'm not sure if this is manipulation or not), I offered her a solution so she could stay in her home but she doesn't want, she doesn't want a stranger in her house, so I don't know...
Every time we see a NH I feel very sad. Sad to the point of wetting my eyes and my heart beating faster. I try to keep positive, so she doesn't feel sad, but I can't help feeling extremely sad and guilty for doing this to her, a woman who just until recently was independent, had her own place, her routine, her memorabilia and a social life. Now she'll be going alone to a one size fits all facility.
I can't help thinking I'm being mean, lazy, selfish, and what if I give her a chance to get better, maybe she won't be so dependent in a few weeks, or how can I not make this little sacrifice for a person? Could it be that hard? (right now I have a caregiver to help which makes me forget how hard it was taking care of her all the time, but she'll leave soon)
So we have to decide fast, because it's hard to find places available and when we do we have deadlines to decide and I will again have no help at all soon. I'm not sure I can go back to that guardian angel routine doing her hygiene and dirty diapers the minute I get out of the bed and just before going to bed, going to work (night shifts) and stressing she's home alone, also cooking, shopping, cleaning, and hearing my name being called all the time for every little help needed. My back pain is killing me.
I can't count on her son to help me. He doesn't understand the hard work or the emotions involved. To him this is easy, a little help with her hygiene and it's done, I can go out and have fun all day. I don't even know if he wants her to go to a NH or to stay home, but nothing he says seems to take in consideration her well being (or mine).
She says people nowadays don't care for the elderly and I keep telling her (and myself) people nowadays can't even take care of their own children, they put them in nursing homes too, and use school, sports and other after school activities to keep them busy and to let someone else take care of them while they're at work.
We all will be in her position one day (my boyfriend too). And it's really sad...
No, it wasn't, since at the age of 96 my mother was living alone, with macular degeneration, loss of hearing, and the beginning signs of dementia. It was advised by medical staff every time my mother was hospitalized, for minor incidents that she needed to placed in a nursing home, so with the help of a social worker, a decent nursing home was found were she is well taking care of, and as of today she is alive and well at 100 years of age, and doing fine for a person at that age.
Just came into this website to vent and try to find some closure. My dad had a stroke six years ago when I was living abroad. He went from living with my brother to being put into a nursing home. My family and I decided to move back to the UK at the beginning of this year with the view to one day be able to have dad at home among his grandchildren but last week he past and now I feel an enormous amount of guilt that I didn't came back sooner to look after him. I'm sure a lot of people have similar feelings but I'm having trouble coping and was just reaching out.
I am in the process of putting my mother, who is 60 and has early onset dementia, in an assisted living facility. I have gotten a lot of lip from people about my decision and consequently all of them are the people that visit her once or twice a month for an hour or less. Bottom line, I am an 28 year old only child with divorced parents and I cannot provide the care that she needs and constantly monitor her alone. It is not possible and that is not even getting into my needs that I have been completely neglecting for the past two years. The next person that tries to guilt trip me and tell me I am selfish and an awful son can gladly have the POA that I have transferred to them and they can spend 24 hours a day constantly worrying how my mother is going to hurt herself or someone else and spend every waking (I can't sleep so it really is a waking moments) trying to prevent what is the inevitable. And fighting with them and being verbally abused for trying to help. If you are alone with no viable consistent resources to help you cannot do this regardless of how much praying or reassuring you do.
Betty, I was able to care for my spouse at home, right to the end, with a lot of help. I never promised him that, though. My promise was "I will never abandon you. I will always see that you get the care you need. If it happens that I cannot give that to you in our home, I will find a good care center. I will be your advocate. I will be with you often."
And I was prepared to live up to that promise. But I'll bet, like you, I would have felt guilty if he had had to go to a care center. Caring for a spouse is very different from caring for a parent. (I've had both experiences.) We have the sense that "only death should part us." but in reality severe illness or impairments can part us, too.
Betty, Not Your Fault. You may be able to be a better mate to him now that his basic physical needs are being met by professionals. You are still his life partner. You are the only one that can fill that role, right to the end. I hope you are able to visit him often.
My situation is not about my mom but about my 88-year-old husband that I've just a week ago put in what I feel is a very good nursing home for long term care. I'm 77 years old and have multiple medical problems myself. I have been caring for him on my own 24/7 since mid-January with no help from anybody. The children involved are too busy with their own lives and feel it is my responsibility to care for their father. I finally reached my limit and realized that I might be the first one to die and then who would look after him. I feel very guilty but I also feel he is getting much better care at the nursing than I could give him at home and I believe he will live longer by being in the long term nursing home.
Has anyone else had this experience concerning a spouse?
mc52628 my advice is to keep on keeping on. You have done the best thing you can. In a perfect world your mom could live with in. In a perfect world she would not have depression and dementia. We all do the best we can to deal with an imperfect world.
I would suggest you try to arrange for someone else to be with her when you leave. Time your visits so you leave her at the dining table, or when the nurse comes to give her pills. It takes two aides to transfer my mother to the toilet so if that happens during the end of the visit I leave while they are busy with that, even if I was going to stay a little longer. My mother does not cry when I leave, but it seems to work out best if she is distracted during the actual leaving.
I wish I could take my mom out of the home. On the other hand, she has absolutely thrived being there. She has a couple of friends. She does activities. She gets her hair done right on site. She eats well. She gets her few pills on time and at the right dose. It would be selfish of me to take her away.
Here is a hint: guilt feelings are an integral part of caregiving. Sorry. You either feel guilty that your mom is in a home or that your children are exposed to tension in your home with her there or that you can't provide all the opportunities the home can for socializing. Ain't no guilt-free option. So push those awful feeling way to the back of your mind and continue to do the best you can in this imperfect world.
My mom has depression and dementia. She can't dress herself and was living alone under my brother. We had care for her during the day. But night time was the worst She would get up and start doing things. Sometimes falling. We had no choice because of her finances to put her in a home. It is a pretty nice one. But every time I leave her she crys. Its awful for me. I just want to take her out of there and take her home. But i have two kids and a husband at home. it would be very hard. Any advice out there?
I am struggling with my Dad, I have been his caregiver 3 years now. He has become so dependent on me (I do everything). My Dad was put on Hospice in Home care, Dementia (moderate to next stage), Heart disease, Wheelchair bound unable to walk. I have dealt w/his emotions, confusion, hallucinations, being giddy, sad, and just recently "wandering" at night into the road. Up till a week ago he was fine by himself at night. I am placing him in a Nursing home, I have no other option. Yes the guilt is killing me, but I have realized I have had his back did what I can and been there through all of this. He has changed the past week, very defensive toward me, yelling, tells me I talk jibber jabber to him. We had an argument this morning only because he is so confused, and afraid of what is happening. Told me he can stay right here that he does not need anyone to take care of him and for me to get out of here.....The caregiver is there for now, I will go back in a little while to relieve her and stay the night.......I know that what I am doing will the best for him, he will be placed end of next week
i'm thankful for this discussion. every one of us has a unique situation & it will not be easy for anyone. my mother is in a nursing home on the advice of hospital physicians. she was hospitalized because i am not capable of caring for her. i tried for nearly one year & caused her suffering. now she is in the only home in our region that would accept her after hospitalization. i feel that, in following my own desires for her, wanting to keep her with me & care for her, i was wrong. we should all start by thinking of what is really best for our loved ones & not about what *we* want to happen. this is what i would suggest to anyone facing this issue. i have nothing but regret, but must look beyond myself for answers.
My Dad has had Dementia for many years now, until recently I let him stay alone in his home and I went to see him every week....he was forgetful but felt arent we all at times, he was in no danger, then one day I found him in a much worse state...not changing clothes, not eating normally and confused playing with his phones and cable...taking them apart...he had 40 batteries all over the house and would unplug cable box and had problems getting in contact with him...driving over 40 miles to fix these problems, well I knew it was time he could not be alone, all my family has passed and I am alone to deal with this, so I brought him to my house to his own room where I felt I could take care of him...7 weeks and that did not work....he so changed over night, he became combative, talked dirty to me, when I went out to run errands he would look in my room, the closets and showers....always telling me I left him, ..always laying down and barely doing anything, tried games, puzzles, even TV was an issue...his brain just cant hold 2 minutes on anything..I felt this move really distrubed his mind more....I live in a very small condo and felt no room for both of us...either of us had no room....so I felt he would do better in a living facilty...after looking and the help of a elderly site, places for him came in 2 kinds....very bad and very expensive...120 to 130 a day for a tiny room and 40.00 plus a day for just the bare basics....total 4500.00 a month, and he does nothing...but sit all day..enjoys mealtime in Dinning Area, and visits from me, thats it....but 4500.00 a month is waying on my mind and pocket book....hes at level one...care no meds...its just his mind and still remembers nothing after 3 mins or so.... cant imagine if things got bad, how much more it would cost me....I see others in this facility that have huge rooms with a whole home inside their areas....to have lots of money I guess no worries, but thats not me, am so nervous about money and its only been 4 months, yet he seems to be content and semi happy and of course safe, he has never been combative here, never gets unruly or anything....but I am worried about this much money going out ...could be years of DEMENTIA or so I read and more issues may come and way much more money....I know there are not many choices from here, that I could bare to have him go, except back to my house.....dont know what will happen...but know 4500.00 will deplete me in a year or so....at this level...I am struggling on what to do after this year is up, have been told to put him on Medical they take care of all....its does not sound good to me....private paid nice to Medical paid not nice place.....struggling for him and me, I am drained, and depressed...I worry about if Im not ok, what will happen to me and him!
Excellent insightful article, thank you Carol. I happily share this with my community. Our own life is important. And learning more about coping strategies and acceptance is something I advise every caregiver to do. Reach out a professional for support, and you can have more peace of mind.
I appreciated this article. One week ago I put my 91yo Mom with Dementia in a memory care facility about 10 miles from me. It was the best facility I could find for her. I feel somewhat guilty about doing it and I worry about the care she's getting, but I'm also realistic. After years of doing this I realize I'm totally physically and mentally burnt out. No longer can I provide the 24/7 care she needs. I had hoped to keep Mom home until she took her last breath but that's not going to happen. So I need to face the new reality and not be consumed with guilt, but rather make the situation the best I can for her and that means working with the facility to get her the best care possible. We're still in the adjustment phase but so far Mom seems to be doing ok. I visit almost daily and some days she's good and I wonder "why have I put her here?" but other days the reality of her condition is very clear and I know why. Shes' had a couple of falls(non injury) one from not using her walker and the other from tripping over another persons foot. But then, she had falls at home too. At least at the facility there are more people to help her up than just me. She seems to enjoy being around more people and the activities. The other day when I visited her we were playing the card game War (she loves to play cards) and I realized how nice it was to just be her daughter and enjoy something pleasant with her. I know my responsibility for Moms' care has not ended, but just changed. Even if she doesn't remember me I intend to be there for her as her advocate, her friend and her daughter. I really do love her so much.
I can see both sides. I had my husband at home, paralyzed on one side, for nine months until he died in November. We were married 63 years and I miss him every day. I also had people who said...put him somewhere...you are killing yourself...you cannot take care of him. He was very large...6'6" and without hospice, I would have lost my mind. God bless them, they came every day and bathed him. The nurse visited once a week as did the Social Worker. When I had about "had it", I would get Respite. They would have to come and get him with an ambulance and take him to their facility for five days. The first time, I felt guilt that I thought would NEVER go away. I cried, I screamed and I hid in the house. When he came home, he was NOT changed...and I finally excepted that he wasn't going to change...he was dying...very slowly. The subsequent Respites, I learned to use that valuable time to meet with friends for lunch, go shopping or just drive around and see something besides my husband "leaving me". I am not sorry that I kept him at home. My daughter, granddaughter and I stood around his bed in November as he was taking his last breaths. I gave him "permission" to go. I hugged him and prayed with him. He had no idea what was going on...but then again maybe he did. I had many precious moments over that nine months that I would not have had if he were not in that hospital bed in our living room. Yes, it was hard. Yes, I was tired. Yes, I wanted it different...I wanted him back to be himself but thanks to the Hospice group and the strength that I received from God and my church friends, I made it. Some of you have very different "patients". Though he had some dementia, he could not leave the bed. If your patient is mobile, that is another story. It is dangerous for them to be alone at all as they may wander off or hurt themselves. It is as if you have a three year old again. And we all know about the "terrible threes".
So please talk to you Social Worker, your doctor, your pastor, any one who can assess YOUR situation and do NOT carry guilt. It is a load that YOU put upon yourself....not one that OTHERS can. Do not accept it. Love and hugs to all going through this difficult time. Mine is gone, but I keep up with all of you. God bless you and give you strength.
It's not that simple. A 'commitment to some life of your own' will make you feel worthless, a failure for being unable to help a parent who meant everything to you and who sacrificed her life to care for you when you needed help.
When my mom died in September, I felt an overwhelming sense of guilt and self hatred and was totally incapable of forgiving myself. I had failed her and myself. In her hour of greatest need. I should have been there more for her, done more for her, gotten someone to stay with her when I was at work, during the last months of her life, kept her out of a nursing home.
I felt like I was to blame for her suffering and death. I asked my mom for forgiveness before she died, and she whole heartedly forgave me, but I still could not forgive myself. Only counseling from a Catholic priest has helped me. He has made me realize that God's sacrifice is greater than my sins.
Feelings and emotions run very deep. It is easier to write an article about the decisions primary caregivers are forced to make , but it is very different from having to make these decisions yourself in a time of great stress, and to live with the consequences of those decisions afterward.
My wife had a live-in home care person to care for her mother who was suffering from vascular dementia. Her mother lived alone. The doctor kept telling my wife to place her mom in a nursing home. So we placed her on a waiting list following her doctor's request. 6 months later her mother entered the nursing home and she immediately went down hill and less than one year later her mother passed to life eternal at the age of 92. The medicare doctors that visited the facility we terrible. Based on our experience, I would put off nursing homes as long as possible. Her Mother was at the Lutheran Home in Arlington Heights which is like the Cadillac of nursing homes. We don't know how much longer she could have stayed at home or how much longer her live could have been. My wife is still dealing with the emotional effects of placing her in the nursing home to see her mother have a failure to thrive. She visited her mother every day until the day she passed. So seek alternatives before placing her in a skilled nursing facility.
I hope people in this situation will heed your words. We had to move our father to a nursing home when his primary caregiver at home, our mother, was diagnosed with pancreatic cancer. It was an easy decision for us to make. There seemed to be no other choice as we now had both of our parents to care for. The fact of the matter is that Mom probably kept Dad home longer than she should have. She might have fared better had she turned his care over to professionals sooner. And in some ways, considering the amount of help Dad needed, things were better for him at the nursing home. He was able to be around more people and had daily access to nurses and a doctor if needed. The nursing home was equipped with a geri chair for him, electric lifts, and a shower he could be taken into even though he was completely wheelchair bound. A dietician planned his food and was prepared (basically ground) for his needs. When the loved one's care requires extreme and extraordinary measures, often the benefits of a nursing home outweigh the emotional toll of moving them there. It can be in his or her best interest too. Christine M Grote - author of Where Memories Meet—Reclaiming my father after Alzheimer's.
Katie 222, I like your flower. Second of all, if the nursing home I ended up in or my sister was a five star and everybody gave me lackadaisical care and wanted 80K from me, they wouldn't get squat from me! That cotton picking place can take me to court and sue me if they want, but it will be their word against mine.
This article really reminded me of a book I read recently called "The Caregiving Trap" by author Pamela Wilson... Hindsight is 20/20 and it is soooo important to identify the early signs that care is needed and plan accordingly. This book helps you do just that as well as figuring out all the personal, financial, and health risks as a caregiver. What I liked best about the book was it gave really helpful advice about how to initiate these types of conversations with your aging parent. I was so worried about talking to my dad about taking his car keys as well as what his ideal care plan would be has he gets older and this book gives real life scenarios and realistic options on how to handle them. There are so many difficult conversations that need to be had and it's great to hear suggestions from someone who has already been through it. I hope you and your readers will check out this book.
jeannegibbs: Thanks, you really do need to talk to the staff and let then know the deal, otherwise how else would they know? It can be done without being labeled as a troublemaker or an annoyance. And unfortunately, sometimes you have to repeat yourself a few times too. And once you get to know the staff a little bit you sort of "humanize" yourself and your loved one too, as they see you're just genuinely concerned and not just a pain in the butt. And furthermore, when your loved one sees you interacting with and chatting with the staff they feel more at ease around them as well, it's almost like an endorsement in a way.
lolipop1, I think dmanbro is right. The best way to know about the quality of care is to visit often, at different times of the day, and to get to know the staff. Try not to become known as a trouble maker, but do be firm and polite in your questions and requests to staff. Listen carefully to your parent and take them seriously, but also consider the possibility they are not always accurate -- especially if they have dementia. For example, my mom with say "I haven't eaten yet" when I've just seen the waitress clear her used plates away.
If you are the main caregiver, you still have that role, but now it involves different kind of duties. Observing and advocating become critical.
If you are some distance from the care center and cannot visit at least weekly, then you have more challenges. I hope someone in that situation posts their experiences here.
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Coping With the Decision to Put Your Parent in a Nursing Home
But she is up all night, calling out for my mom or others, I mean all night my mother gets no sleep. I mean none. The calling out is now happening all day. Any advice? My mom is Lori g her mind. And the guilt is preventing her to put her in a care facility. I know my granny would not want my mother's life to stop, and it has.
Even though she's not my relative (boyfriend's mother) and even though she's manipulative and hard to please, and even though I should not be in this position, I feel extremely sad and guilty for putting her in a nursing home (NH). She says she wants to go, because she has no alternatives (I'm not sure if this is manipulation or not), I offered her a solution so she could stay in her home but she doesn't want, she doesn't want a stranger in her house, so I don't know...
Every time we see a NH I feel very sad. Sad to the point of wetting my eyes and my heart beating faster. I try to keep positive, so she doesn't feel sad, but I can't help feeling extremely sad and guilty for doing this to her, a woman who just until recently was independent, had her own place, her routine, her memorabilia and a social life. Now she'll be going alone to a one size fits all facility.
I can't help thinking I'm being mean, lazy, selfish, and what if I give her a chance to get better, maybe she won't be so dependent in a few weeks, or how can I not make this little sacrifice for a person? Could it be that hard?
(right now I have a caregiver to help which makes me forget how hard it was taking care of her all the time, but she'll leave soon)
So we have to decide fast, because it's hard to find places available and when we do we have deadlines to decide and I will again have no help at all soon. I'm not sure I can go back to that guardian angel routine doing her hygiene and dirty diapers the minute I get out of the bed and just before going to bed, going to work (night shifts) and stressing she's home alone, also cooking, shopping, cleaning, and hearing my name being called all the time for every little help needed. My back pain is killing me.
I can't count on her son to help me. He doesn't understand the hard work or the emotions involved. To him this is easy, a little help with her hygiene and it's done, I can go out and have fun all day. I don't even know if he wants her to go to a NH or to stay home, but nothing he says seems to take in consideration her well being (or mine).
She says people nowadays don't care for the elderly and I keep telling her (and myself) people nowadays can't even take care of their own children, they put them in nursing homes too, and use school, sports and other after school activities to keep them busy and to let someone else take care of them while they're at work.
We all will be in her position one day (my boyfriend too). And it's really sad...
And I was prepared to live up to that promise. But I'll bet, like you, I would have felt guilty if he had had to go to a care center. Caring for a spouse is very different from caring for a parent. (I've had both experiences.) We have the sense that "only death should part us." but in reality severe illness or impairments can part us, too.
Betty, Not Your Fault. You may be able to be a better mate to him now that his basic physical needs are being met by professionals. You are still his life partner. You are the only one that can fill that role, right to the end. I hope you are able to visit him often.
Has anyone else had this experience concerning a spouse?
Betty
I would suggest you try to arrange for someone else to be with her when you leave. Time your visits so you leave her at the dining table, or when the nurse comes to give her pills. It takes two aides to transfer my mother to the toilet so if that happens during the end of the visit I leave while they are busy with that, even if I was going to stay a little longer. My mother does not cry when I leave, but it seems to work out best if she is distracted during the actual leaving.
I wish I could take my mom out of the home. On the other hand, she has absolutely thrived being there. She has a couple of friends. She does activities. She gets her hair done right on site. She eats well. She gets her few pills on time and at the right dose. It would be selfish of me to take her away.
Here is a hint: guilt feelings are an integral part of caregiving. Sorry. You either feel guilty that your mom is in a home or that your children are exposed to tension in your home with her there or that you can't provide all the opportunities the home can for socializing. Ain't no guilt-free option. So push those awful feeling way to the back of your mind and continue to do the best you can in this imperfect world.
back in a little while to relieve her and stay the night.......I know that what I am doing will the best for him, he will be placed end of next week
in a memory care facility about 10 miles from me. It was the best facility I could find for her. I feel somewhat guilty about doing it and I worry about the care she's getting, but I'm also realistic. After years of doing this I realize I'm totally physically and mentally burnt out. No longer can I provide the 24/7 care she needs. I had hoped to keep Mom home until she took her last breath but that's not going to happen. So I need to face the new reality and not be consumed with guilt, but rather make the situation the best I can for her and that means working with the facility to get her the best care possible. We're still in the adjustment phase but so far Mom seems to be doing ok. I visit almost daily and some days she's good and I wonder "why have I put her here?" but other days the reality of her condition is very clear and I know why. Shes' had a couple of falls(non injury) one from not using her walker and the other from tripping over another persons foot. But then, she had falls at home too. At least at the facility there are more people to help her up than just me. She seems to enjoy being around more people and the activities. The other day when I visited her we were playing the card game War (she loves to play cards) and I realized how nice it was to just be her daughter and enjoy something pleasant with her. I know my responsibility for Moms' care has not ended, but just changed. Even if she doesn't remember me I intend to be there for her as her advocate, her friend and her daughter. I really do love her so much.
So please talk to you Social Worker, your doctor, your pastor, any one who can assess YOUR situation and do NOT carry guilt. It is a load that YOU put upon yourself....not one that OTHERS can. Do not accept it. Love and hugs to all going through this difficult time. Mine is gone, but I keep up with all of you. God bless you and give you strength.
When my mom died in September, I felt an overwhelming sense of guilt and self hatred and was totally incapable of forgiving myself. I had failed her and myself. In her hour of greatest need. I should have been there more for her, done more for her, gotten someone to stay with her when I was at work, during the last months of her life, kept her out of a nursing home.
I felt like I was to blame for her suffering and death. I asked my mom for forgiveness before she died, and she whole heartedly forgave me, but I still could not forgive myself. Only counseling from a Catholic priest has helped me. He has made me realize that God's sacrifice is greater than my sins.
Feelings and emotions run very deep. It is easier to write an article about the decisions primary caregivers are forced to make , but it is very different from having to make these decisions yourself in a time of great stress, and to live with the consequences of those decisions afterward.
If you are the main caregiver, you still have that role, but now it involves different kind of duties. Observing and advocating become critical.
If you are some distance from the care center and cannot visit at least weekly, then you have more challenges. I hope someone in that situation posts their experiences here.