If you knew then what you know now, would you still be a caregiver to your parents?

Mom is near end of life and she had symptomatic Alzheimer's for 10 years now. I hope she can reach 90 in 3 months but that is unlikely. We only have one mom, and I tell her I love her every single day. Despite how advanced her illness is, she understands I love her and when I tell her that--love is enduring even with Alzheimer's in most advanced forms. She is very back breaking hard work..but I love her dearly. Even if it means sacrificing my life for her. I don't mind---all I know or care about I love my mom. She is my sole priority in life. Nothing else matters.
If you are willing to sacrifice your life for your mom..which will devastate you then be the caregiver. The longer they live, the more intense and stressful the care. I even injured myself providing back breaking dead weight care. Hospice provides very little assistance--the home techs only stay about a half hour a few times a week.

I lost both parents at a young age but I am the primary caregiver for my adult disabled son. He's now 40 & ive been doing this over 20 years. There are times I want to scream, times I want to just have a break for awhile BUT, that being said, I'm thankful for him. I WOULD do it again in a second. As I watch his body deteriorate, it breaks my heart. I know at some point I may not physically be able to care for him but that's not today so we keep going. I intend to have no regrets if the time comes that he's gone.

I would do it again, despite the physical and mental toll it took. I helped her up and down  a lot, which could be physically taxing, I didn't sleep as well, etc.  I'm sure when I was little and I got sick, she took care of me, so Hubby and I did the same for her.  I even wrote a book about our trials called, "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." My husband said that we were in this together, and he not only talked the talk, but walked the walk, sometimes literally, chasing her down the street when she would wander away.  It absolutely turned our lives upside down, but my mom just couldn't handle Assisted Living, (she tried it for a week, and I visited every day, but she just hated it). It was especially hard when my mom would be insulting to me, over nothing that I had control over, (like the rain, for example, as if it were my fault), but I just had to know that it wasn't really "her" any more. It was scary dealing with someone who wasn't rational all the time, but it became our new reality. I also changed my perspective from, I "have" to take care of my mom, to, I "get" to take care of my mom, and that mental shift helped. She was lucid some of the time, so I enjoyed that time with her. Our dog was sick then too, adding insult to injury, but we all just put one paw in front of the other, so to speak, and did the best we could. Of course, each situation is different, so each family just needs to make the best decision for them. There's no one right answer for everyone.

Thank you for posting this. I have felt very guilty about my decision to move mom into a nursing/care facility even though we are struggling financially. I'm currently tryin to get her on Medicaid to help with the financial problem since she had no assets. This sure does make me think about my own care when the time comes. Not sure how I'm going to manage that but I'm definitely making some plans.

II wish I had known more about the legal ramifications of being a POA/agent and fiduciary. It not easy to get the right answers, find the right elder law attorney, find the right care facility and move forward with decisions...but one has to. The best time to find information and make decisions is when one has time to discover the full-extent of a decision -- but often there is no time. So I've done the best thing for the moment, and I've sometimes had to re-do and re-do again. Even on this site, a well-known Medicaid expert has provided information that isn't correct...at least according to my mother's elder law attorney...and our local Medicaid office...and my social worker friend that helps people with Medicaid applications. If I could go back 18 months, knowing what I know, I would move forward differently.

No I would not do it again. I would have found her a nice apartment or bought her a small house. The disruptions to our family, lack of privacy, drama, and loss of time I have for my handicapped son are too much.

I would simply because the ones attempting to be caregivers did an extremely poor job. I concur with the money and brother issue. I tried for years to get her to stop supporting my grown brother (who was stealing from her too!) to the point I had to stay away for months at a time. When she needed care, though, I stepped back in and picked up the pieces. Mom always said she wasn't worried because the Lord would take care of her. Well, He did, but it was at my expense!

I have taken care of both of them now just Mom. Dad past away 9 years ago and lived with us for 5 years. Mom is going on 13 years. Although we love her I don’t think I would have done this if I knew then what my family would go through. My husband is 70 years old I am 63 and Mom is 90 years old. We receive no help from my sister and brother with care or financially. I work full time and take care of my 6 year old grandson two days a week. Most of her care she does herself but my husband takes her shopping and is retired so he is with her all day. If we want to go out anywhere even to dinner she comes. I have asked my brother and sister for help and both never have time. I love her but resent her at the same time would I do it again? No

I would do it again. Even though there are countless days where I am burnt out internally or heartbroken, frustrated, grieving while my Dad is still here, all the emotions you go through, I would. He was always there fo me growing up, it just seems the right thing to do, to give back!!! Love him dearly!!!

Yes, but I would have done a better job. I wish I had put on my Xena personae earlier. I wish I had known more about how to take advantage of services available in the community, I could have replicated a lot of the care my mom received in the nursing home if only I had known what was required instead of having to try to figure it all out by reading on websites like this one. And once she was in the NH I could have saved myself a lot of grief by just going ahead and doing things my way without discussing it with the "experts" who worked there.

It still frustrates me that people I speak to who are caregiving in the community or with a parent in a facility all have the same issues and often with the same people, but there is nowhere to get together to talk about it and share information on coping strategies. I tried the Alzheimer's society support group - no words for how unhelpful that was🙄. I was initially hopeful that the family council at the nursing home would be that place but the mandated structure (a rep from the facility was present) meant it was more of a kumbaya gathering.

Yes I would do it again. However I should have had all my mother's legal documents checked by an attorney. NEVER BECOME THE CARE TAKER UNLESS YOU HAVE POWER OF ATTORNEY OVER ALL FINANCIAL AND HEALTH CARE DECISIONS. Being caretaker is hard enough without having an uninvolved sibling having control over any decisions. If they will not give up control make them the caretaker.

I would definitely do it again, without question. My feelings are that although it can be stressful and fraught with disagreements, parent pulling rank, etc., this is my Mother. She took care of me, supported me, gave her all for me, & loved me when I was at times completely unlovable.

I consider myself fortunate that I have found ways for me to get support outside of family, I have joined a couple of support groups, along with this wonderful forum, that help me to cope with a couple of issues my Mother is dealing with. Yes, sometimes I am frustrated by her behavior, burned out and emotionally drained, but when I look back I know she felt the same way about me, but she persevered. This is my way of giving back to her for all of her efforts throughout my life...I needed her growing up and now she needs me as she ages.

I have never been a FT caregiver with anyone but I know I wouldn’t be with my mom or dad. I have a strained relationship with my mom and she’s living. She’s hard to deal with now at 71 and fully independent but as she loses more and more of it she’s going to become more and more difficult. I am not interested in my home becoming a place of contention and stress and strife every day of the year. I love her but my obligation to care for her does not mean my entire life has to die to do it.

I did this for my father when he was at the End Stage of COPD mom wanted nothing to do with it, so I put everything behind me and stepped in was glad I got the time with dad we were never close until then, today it seemed worth while.
After dad passed I was preparing to head back to my home state but had some major set backs due to my mother (Long story, money was involved, which is always the situation.) and by time I was able to get my act together mother needed help and her first go at a nursing home didn't go well, she completely lost it, so I stepped in again.
So my answer is simply I'm 50/50
Dad was worth the trouble
Mom, as much as I love my mom has been harder then I could imagine and she doesn't want to make it easy, she's put us in financial situations that has left us flat broke and I've been forced to take control over everything but she keeps trying to fight me at this point, I wish I had left when I had the chance, now I'm stuck and dealing with it, some days are better then others of course but, Yeah', most of you have probably already heard all the nightmare stories some may have lived them, I'm living in one now, just trying to keep my sanity.

yes, unlike my siblings, my conscious will be clean.
r.o.

yes, unlike my siblings, my conscience will be clean.
r.o.

If I could rewind the clock I would..taking care of my parents has ruined my life. Siblings disappear...they don’t help. And nobody gets it. I’m alone, exhausted, broke, nothing left. They have literally sucked the life out of me. I have no energy left to even pick up and leave...and go where? I will be dead way before them. The depression alone and isolation are going to kill me. The hurt is to intense to explain. I wish I were dead.

No I would not. When you are younger you don't realize what it means to care for your parents. My Dad is a very difficult person and I had no idea until after my Mom passed away. Plus my sisters are no help at all.

It's hard to imagine with the cost of AL and not knowing for how long that even if the siblings had not been helped that there would have been enough $$ to last.

It is a challenge, in my case there are benefits as well, and I would have felt immense guilt if I had not taken on this role. I've seen what happens when loved ones are placed in a nursing home, and although it gives one a bit more freedom and peace, if one cares, you still have concern and responsibilities and obligations to go check on them and hear the complaints.

I pray that we don't get to a point where mom with dementia needs that level of care...but in the meantime have also become more open to looking for some in home assistance. It's taken a long while for me to accept the circumstances that my out of state sibling was not going to be of any hands-on or other assistance.

I've been my mother's caregiver for 3 years and though it is very tiring, I go on. It is not exactly because we couln't hire anyone (we could manage, even if it would be a bit difficult) et not because I think that I'm better at it than trained people would be. I do it because, as long as I'm the one caring for her, she can more or less imagine that life is still normal. Outside help is of course helpful but also means "you're sick". With me in attendance, though she does realize that her memory is fading, she blissfully doesn't quite know to what extent and practically escapes depression, which, in my opinion, is the hardest to bear. I'm tired, but I've a moderately happy alzheimer's mother, instead of a stressed one.

I am not even doing anything but handling the financial and legal affairs, and I think I would not do it again. It changes everything in the relationship. I am dealing with a brother, dearly loved, but we are a family that always "made nice" and swept anything ugly under the rugs. That can't always be done. There is resentment at the same time there is great need and the waters become very muddied as to whether you are a caregiver or a family member. Fiduciaries charge, and in an effort to save money for care I chose the path of taking care of all the trustee of trust and power of attorney for financial, thinking to be a big help. Yes, it has helped. It has also hurt emotionally and been a huge burden, one you are not thanked for really, as you are seen as "in charge of my money". You just do the best you can, but I think I would, knowing what I know now, just let someone handle it and be paid for it and be able to remain "little sister."

There is a point where you have to ask yourself if it would be better for your mom or dad to be in a nursing home or assisted by paid caregivers. That point is different for everyone.
From all the advice I have read here, you should never move them into your home unless there is no other choice. This is for your own peace of mind. Don't allow your guilt to ruin your life and your own family's life or grind you down to nothing. You have to realize your own physical and mental limitations! Don't make yourself sick over trying to care for them!
In the USA, Medicaid will pay for nursing home care if necessary, also if dad is a veteran, especially from WWII, the VA will pay for his care. There is help for nursing home costs.
MOST doctors are very sympathetic to the needs of the family.

Personally, yes, but each situation and each person is different both physically and psychologically/emotionally. In my own experience, I cared for a MIL, a FIL, my own Dad, and now, part time assistance for my Mom. Each situation was different. My MIL and FIL lived with my family and I. They had separate living quarters so my husband, sons and I had our own space and privacy. It did make care-giving easier to be in the same residence. My son and husband helped with care for my FIL when he became dependent but since he remained mentally competent we could leave him alone (with emergency alerts/contacts) for short periods of time. We also had an aide come twice a week to help with showering, etc. My Dad had a massive stroke and required total care. With the help up my siblings and aides at night we were able to provide care in his home. It was physically and emotionally difficult but I have no regrets as he was in the comfort of his own home with loved ones around him. It was an opportunity to give back to him in a small way, what he had given to his family.
Nevertheless, all situations are different and certainly when there is dementia involved, it is exceedingly difficult. So we each have to honestly assess what is best for all concerned- care giver and care receiver. It will depend on numerous factors and the answer will be different for each circumstance. The most important thing, of course, is that the dependent elder receives the care that he/she needs. This can be accomplished through many means including care by family, in home care, assisted living, adult day care, or long term care facility.  There are no right or wrong answers. Every person and situation is unique but whatever the decision, I concur with all the above who advise getting all legal affairs in order, including a will, power of attorney and health care proxy while a parent is still competent. It makes any transition infinitely easier if a parent becomes unable to handle these affairs for his/herself.

First thing to do is take control of the checkbook and get financial power of attorney. Try to get their life in order for the end before they become incompetent so their wishes can be carried out. My dad still thinks he owns a motor home that he sold 20 years ago!

I most definitely would do it again. The time spent with my parents are now precious memories. Even though some family members have turned on me I'm slowly getting through it. Even though siblings have made nasty accusations against me its actually been a blessing.They have made me see them for who they truly are.

I would not have moved in with my mom. What was I thinking? But I would have cared for her for sure, but stayed in my own house. I'm afraid now of what is ahead for her and for me. She has good care in assisted living, but I watch the other people move out to memory care or nursing homes and have a creeping dread of another change for her as she slips further and further out of reality.

If I had known then what I know now, I would not have quit my job, paycheck, company contributions to my retirement, moved to another state, given up my freedom to do things, strained my marriage, taken a toll on my own health and my husbands health. We are still doing the best we can going on 5 years of care for my MIL with Alzheimer's. We too thought the other son would help because he lives a few miles down the road, but no. He does send flowers on Mother's Day, birthday's, and Christmas. As if that is any help to us. I think it is the best for her care, and finically for her, but not for our care or finically.

Short answer, NO!!

Long answer, maybe, for maximum of six months. In a health crisis only.

Six months is the length of time I moved both parents at different times in my house. Six months was the original plan anyway. Both times, it dragged into years. I live alone and do care giving solo, so time limits are a definite boundary.

I most certainly would not do it AT ALL PERIOD! I am caring for my stubborn 86 year old father who thought he was going to just come and live with me and my spouse in our home for FREE while he sent whatever little money he lad left over each month to his sister in NY. He drew up a will and though I am suppose to get paid for all my services at $15 which is WAY BELOW MY HOURLY RATE when I work I would not do it. I am penniless while I am caring for him and he won't sell his damn houses to pay for his living expenses and wants to leave them to my other sister and a half sister. Go figure. I told him that if he doesn't do something positive soon he will soon find himself alone in his house and no one to care for him. He would not last more than maybe seven (7) days. He needs constant care and I absolutely HATE IT! I did not put myself in debt for a Masters Degree in Aviation Management to be a cleaning person!!!! FYI, my dad did a lot for other folks including my half sister and nothing for me and my legal sister who he had with our mother his wife period!!! My blood sister absolutely refuses to do anything for him after she had made promises!!! The half sister doesn't even call me to see how he is doing. He is the one calling them. I blocked their numbers...I do it all, I cook, clean house, clean him, grocery shopping, doctor's appointments, cleaned out 60 boxes that packed in NY and brought on the rental truck to FL, I fix whatever needs to be fixed in his home, pay all his bills, look after his medicare plan etc. I am overwhelmed, and so damn tired. His home is in a God forsaken area with no signal for my cell phone...I absolutely HATE IT!!!! I thought I was done cleaning out his stuff when I went the dresser and chest drawers to put some of items in them I found that I had not gone through these yet. Oh my goodness, I am so tired!!! I found things about how my mom suffered while living with him...as I am cleaning out his stuff I am bawling like a baby not for him but for my deceased mom and how she suffered at his hands as well as the healthcare system that KILLED her...she got MRSA in the hospital and spent 10 and half months and never came home!!!

Both of my parents were/are in facilities once they could not care for themselves. My Stepfather was not, he was totally cared for by my mother( Alzheimer’s) . Both of my parents got much better care than my stepfather. My mother did her best but something families don’t consider is they do not have the professional understanding to care for a sick person. They simply don’t understand the illness like those educated in it do. It amazes me that people who would never think they could diagnose or treat an ulcer alone assume they know how to best care for dementia . If they did they’d realize 99% of them are not physically, emotionally nor mentally up to the task.