I would like to hear from those of you who chose not to be a primary caregiver. Explain why you made this decision and why you feel it is the right choice for you.
Please chime in if you did try caregiving in your home or moved into their home and later stopped being a caregiver or if you are a current caregiver and considering making other arrangements for them.
This is not an inquiry about why you are a caregiver in your home. Although, you could start a separate thread for that if you like.
I do understand that in certain situations a person does not have the opportunity at the present time to place their loved one in a facility, even though they may like to.
I realize that some people do not have the resources for an assisted living facility or have not yet applied or in the process of applying for Medicaid for a nursing home. I have also heard that not everyone is even eligible for Medicaid. Some people have to become wards of the state. It can be a time consuming process to prepare for placement.
There are some posters that feel that adult children are solely responsible for being caregivers to their aging loved ones.
So, I think a post that addresses this topic may be of interest to our readers and we can learn from each other’s viewpoints. Hopefully, we will support one another as well.
I certainly respect any and all caregivers, no matter what choices they have made. This post is not meant to upset or offend anyone. Blessings to all of you. 💗
Wow, what a journey you had with your family. I have tremendous respect for the posters on this site. All of you have inspired me in one way or another. The common thread that I see is that after going through such anguish that most have endured, we are all survivors.
Somehow during huge challenges caregivers are able to pull it together even in the midst of chaos and find solutions that are needed.
It’s so hard for the elderly to be faced with heartbreaking situations. Your dad went through the mill. It’s equally hard on the family. You handled it. You were not defeated by this devastating situation. Hats off to you!
Mom was the primary care giver and I supported her as much as I could while working out of town. Because of his PPD, Dad couldn't acknowledge he had problems or designate POAs. My mother didn't want to file a guardianship petition because she didn't want to put my father through something like that. I got a work from home job and built a house down the street from my parents. The stress of taking care of my father as he entered the advanced dementia part of his journey began to take a toll on my mother as she reached her 80s. Mom needed more help and support, my nephew's marriage broke up and I suddenly became primary care giver for his children (ages 2 and 5). Mom's PCP told her the care giving stress was beginning to have a major impact on her health so I began to push to Mom to gain guardianship and place Dad in a new MC just 3 miles from their home. My sister began a losing battle with lung cancer and shortly afterwards Mom was diagnosed with MCI (short term memory deficits and no dementia). Dad had a heart attack and was diagnosed with CHF and his medication management became very important. He would not cooperate and take his medicine as prescribed.
The final straw was when my 84 year old demented father pushed my 82 year old mother with spinal stenosis and caused a fall; he would have followed up with blows but I wrapped my arms around him and pinned him against a wall. Told my mother I was petitioning for guardianship of Dad whether she agreed or not so I could place him in MC. I took a leave of absence from work to handle my "family" issues: guardianship petition, parental care, child care, and my sister's final days. As soon as I was awarded guardianship, I moved Dad into MC and Mom moved into my home. Dad would take his medication for the MC staff and his health immediately improved. Mom's health immediately improved too as soon as the care giving load/stress was lifted. My only regret is I didn't push at least a couple of years sooner. I should have moved for guardianship and placed Dad at least 2-4 years before I did but I bent to my mother's wishes to care for her husband in their home.
ADVERTISEMENT
Your mom has a wonderful support system where she is! She is blessed and so are you. Yes, it becomes so stressful being a caregiver. Sounds like you have things under control.
I like her pastor! Wise man. I would have been tempted to write him a thank you note and send a donation to his church.
I adored my mother in law. She was so sweet. I admired her so much for breaking cycles. Her mother and mother in law were hateful to her. She promised me that she would never treat me that way and she kept that promise. She only showed love towards me. She told me that I was the daughter that she never had. I was always closer to her than my own mom. I called her mom. She died far too young. 68 from non Hodgkin’s lymphoma. I miss her.
You saying your mother hired a maid to live in until you were 13 brought to mind my ex husband. His mother did the exact same thing......because she was SO upset that he was a boy! He was her last chance to have a child and she wanted a girl, so the disappointment was devastating......if you can imagine such a thing. Anyway, one time when MIL was visiting us and DH was about 42 years old, mother brought up the live in maid that stayed in his room until he was 12. He was flabbergasted....he had NO memory of the woman and had blotted it out entirely! Of course mommy dearest felt the need to tweak his memory and keep saying OMG I can't believe you don't remember Elena. He went on to have serious mental health issues after that and we divorced at a later date. *He always had mental health issues, I should say. They just worsened dramatically after the memory refresher*
Wishing you all the best moving forward.
As far as my mother is concerned: I cannot possibly care for her and be sane or have a healthy marriage at the same time. I cannot possibly live with her - she's across state lines anyway. And will not allow her to live with us. We considered it several years ago - but now there's no way with her current behavior and needs. Again, my husband comes first. And now, he is a fall risk, and has a few health issues so I have to be there for him, not my mother.
My mother failed to plan for her old age. No estate planning, or poa or trust or anything. To bad for her. As of today, I still have no idea what's to come with regards to her, or her near future living situation. She refuses to move out of her large 2 story home to AL, or even a smaller condo for that matter. Currently shes in LTC, (after a short stint in the hospital - 2nd time within a year) and I am staying away from her until she agrees to assign me her POA, or I can get guardianship. I'm her only daughter/child/family and she doesn't seem to trust me, and she's abusive to me. Why should I even try to help her. I don't like her. I love her as a daughter would - she's my mom. BUT she's a very selfish, narcissistic, delusional woman and we have always had a somewhat toxic relationship. I know there are others here who can relate - cause I read about it daily. Toxic mothers. She's a very difficult woman to be around. Growing up I was always embarrased by her because of her behavior. And I myself had to unlearn many bad behaviorial habits that I learned from her. Also, for those who want to respond with (but she gave birth to you and took care of you while growing up. Well, sort of. But she hired a live-in maid for me until I was 13, because she didn't want to bother with the messy stuff. She didn't take care of her mom when needed either. AND she had a hands off approach with my father in his frail old age. So - I have no reason to be a caregiver to her. Quite honestly, she doesn't deserve my attention.
That's my situation with my mom (89). With my husbands mom/MIL - it was very very different. Complete opposite. She lived in AL, but we visited her and hung out with her almost on a daily basis when we were in town. We also flew her out to our sailboat when it was in the Virgin Islands - she was so fun to be with - but she needed care for sure. She was wheelchair and walker bound, overweight, but sharp, smart ,funny and nice. We wanted to be around her. I truly loved her.
She passed away from pancreatic cancer at 78- in her own bed with us by her side. I always treated her as if she was my own 'dream' mom. We miss her, and wished she had lived longer.
Anyway - I'm not abandoning my mom , just being very careful how to proceed without doing to much damage to myself or my marriage. I'm already hurt emotionally by her , with all that she put me through this last year. I have considered professional counseling, but I do have several friends that have been supportive and given me a shoulder to cry on. I'm thankful for that.
This forum has also given me strength and wisdom, and I'm thankful for that too!
You have come so far. I remember your first posts. Gosh, like my first posts too. I was a basket case! Doesn’t it feel like at a certain point the blinders came off for us? I admit that it took me far too long but better late than never, right?
I agree about lealonnie, she has been our voice of reason on this forum. She set me straight. That’s for sure. I tend to relate the most to people with a direct approach. I suppose because I look back and see that sometimes I needed a swift kick in my rear end. LOL I am grateful for the honesty from Lealonnie and many, many others.
Wow...we never know what we will end up facing, I am glad that APS was involved to help protect your mom.
I understand why you had to place your mom. I would not want to reopen wounds. I respect people like you most of all because so many others just simply walk and feel absolutely no obligation to make arrangements for anyone that has abused them.
Not that I have any right to judge them for walking. I’m not. I understand that everyone has their own set of circumstances that determine what actions they take.
Never did I once feel in judgement by you. I can tell that you understand why or how taking a parent in occurs.
I will say that full time caregiving can break us and I suppose we become overwhelmed, fragile and at times overly sensitive too because of all the criticism from our parents and siblings, etc.
You know my story, I took mom in after her home was destroyed in Hurricane Katrina.
That was such an emotional time for all of us. I didn’t have the foresight at that time to turn mom away or make it a temporary stay until I found placement.
Plus, as you know she was reaching the age where she shouldn’t have been alone due to her Parkinson’s.
She could no longer drive so I was at her home all of the time taking her here or there or running all of her errands. I had my kids at home then. It was hard!
My girls had tons of school work because they were in the advanced classes, played volleyball, dance and gymnastics, music lessons, art lessons, theatre, etc. I look back and don’t know how I managed. I guess it all built up later on and well, as you know I was falling apart and crying to this forum constantly. It eventually catches up to you.
I am so thrilled to see that you have not gone down the roads I have. I really thought I was doing what I had to do. I am glad that you had the help of this forum. If I had the benefit of having a forum way back, maybe I would have made better choices too.
It scared me when my daughters said that they would take care of me. My response to them was, “Like hell you will!” After doing it myself I simply couldn’t allow that. No way! Never! Not a chance!
It’s expensive to take in a parent too. I am so proud of you that you and your husband are preparing for your future. Please keep telling people about the importance of doing that while young like you.
Yes, I realize if people have financial hardships, that it is impossible. If not though, it’s best to prepare. We are all going to get old one day!
Take care, Cali.
However, a new twist to the story: When we were trying to get guardianship, it came to light that some folks were financially abusing mthr and one appeared with documents signed by mthr prepared by an attorney living with the presenter's grown son in a domestic partnership, an unethical behavior. An attorney should not have any strings to the people the attorney is helping bring control of property to, but it's hard to prove. APS rightly noted that this person was trying to pull a fast one and suggested that if we were not already planning to put mthr in a home, that we should so that this person could not allege elder abuse towards us. APS said that they had seen it before, that people who were mad that they could not profit from someone would try to get the family in trouble. Of course we were already doing what they suggested, told the home no visitors and to call us if anyone came unannounced, and had no problem.
One person from the home town came to visit (quite a surprise) and could not see mthr until they were cleared with us. This person would have told a particular person back home, and that person would have known to tell the financial abuser how difficult it was to get in to see mthr. So - I have mthr in a home for her own protection - bodily, mentally, and financially.
I think if it weren’t for this forum, I would probably have made or be getting ready to make some bad decisions and I wouldn’t feel so strongly about putting my family first. Because I can see how easy it is to get caught up in a crisis and all of a sudden your life revolves around your aging parent and you never stopped to think how your decisions would affect your family.
i have the utmost respect for people like you who took in a parent and cared for them. It really is a selfless thing to do. You have to be a pretty special person in order to do that.
You did what post people would do in that situation. I hope you don’t feel like I was judging you or anyone else who made the decision to be a family caregiver because I definitely wasn’t! It’s such a selfless thing too, for those of us who haven’t yet had to actually make the decision, it’s hard to understand what makes someone decide to it. In your case there was a lot of pressure and I totally get that!
You are so grounded. Really, you are. You study the situation but you know what works for you and equally as important, you know what won’t work for you. That’s not being selfish at all. That’s being smart! I love that quality in you.
I also love your devotion to your family. They come first. Oh, how I wish I had had your insight. I could have saved myself a lot of pain and heartache. I had different circumstances and a lot of pressure on me. Unfortunately, I paid a price for some of my choices. All I can say is that I had the best of intentions but they weren’t the best solutions.
You also have the ability to know those around you, such as your parents and your brother. That is a gift. You are quite intuitive. I love your confidence.
Sure, we all question things from time to time or have self doubt. That is completely normal. From what I have observed of you, you have it together! Your children will learn a lot from your strength.
I’ve never been able to understand why some people are willing to sacrifice so much for parents who have already lived a long life & got to enjoy retirement & be grandparents. It just doesn’t seem fair to be and I can’t make sense of it. I understand that there are people who, for a variety of reasons, feel obligated or who were groomed a certain way. And some people honestly believe they have no choice.
It just really isn’t fair to put your life on hold and sacrifice years of retirement and miss out on a lot of things with your children and grandchildren, so that your parents don’t have to go in to a nursing home.
i look at my parents and.....yes at 71 they are in worse shape then some who are 91. But they have lived long lives, they both retired early, I think both were 55. They had the same jobs for 30 years, they got to raise their kids without dealing with aging parents. They were empty nesters for a few years when my brother was incarcerated. They did take care of my grandma (dads foster mom) for 2-3 years before it became too much and she went to AL. Since then, they have gotten to travel and live the retired live even if they are in poor health. So I can’t find any good reason why anyone would miss the chance to take family vacations, miss their children’s sporting events and other activities, or miss spending time with their grandchildren and making memories.....because they are taking care of someone who got to do all of that already.i don’t think it will ever make sense to me. I can understand making some sacrifices but too many people are giving it all up and for what? We all deserve to live our own lives.
When my mom was in the hospital 2 weeks ago, I was seriously contemplating bringing her down here if the doctor said she would live longer and have a good quality of life. It would mean sharing a room with my daughter. Only way it work is if the kids switched rooms because my daughter has the small office sized room and my son has a large room. My husband would agree to it no problem. But it it isn’t going to happen. My daughter is at a difficult age and needs her space. She doesn’t want much to do with her parents or grandparents these days. Having to share a room with her grandma would be very detrimental I think and I have to put my daughters well-being first. And I truly believe that it’s because of all of you that I have this understanding. A few years ago, it would not have occurred to me how something like this would affect the entire family and all the sacrifices we would make. And I know that it would affect my relationship with my mom. I love her and love spending time with her but I need my space. For the last 20 years, I have had “me time” at night because up until 2 years ago, my husband has always worked nights. I have always had the luxury of having a few hours at night to veg out in front of the TV or take a 2 hour bath or just do whatever I want. He’s on day shift now but goes to bed at 9:30. Kids are in bed at 8:30 and 9:30 and once they all in bed, it’s my time. It’s been this way for 20 years and I do not do well when my routine is interrupted for more than 2 days. My
mom doesn’t go to bed until at least 11pm so she would be out in the
living room with me and I know I would get annoyed by and be resentful.
I also know, thanks to this site, that my moms health will not get better. It is all downhill from here. So while she doesn’t need hands on caregiving, she can do all her ADLs, it won’t always be that way. She does need help with some things because her hands are weak and she has mobility issues & uses an electric scooter so we’d have to deal with loading the scooter up and getting it out and going to get the car & drive it up to where she is. We’d be dealing with making sure the battery is always charged plus having enough batteries for the oxygen tank and honestly it gets tiring. It is a lot of work. I know I would become resentful over all the time and effort it takes. And because of her breathing and mobility, we wouldn’t be able to take her everywhere with us, she would have to stay home and I would feel bad about that and she would too although I know that she would prefer to stay home a lot of the time but I know she would still feel bad not going with us. And obviously she’s going to continue to decline and no doubt I would be up late, up early, always worrying, caring for her would take over my life and neither of us want that.
Know what you mean about not being able to sleep and eat. Happened to me too. Plus I am like JoAnn, really sensitive to smells so the toileting issues and diapers really got to me and I lost my appetite.
We tried to manage as best we could with mom living with us, but her paranoia was so bad that she couldn't sleep, and I would be up half the night with her and up early every morning to check her blood sugar and give her insulin, feed her breakfast, etc. I also have children at home. It got to the point where I was hardly sleeping, barely eating, and was on the verge of a meltdown before I was finally able to realize that we needed to do something different, and started researching care facilities.
We found a good facility and ended up moving her there, where she lived until she passed early last year. Having a team of caregivers rather than trying to go it alone made a world of difference and I think was the best decision for both myself and mom. After a certain point it gets to be just too much for one person.
Some of us did caregiving much longer than we should have, until we broke. Others recognized earlier on that it wasn’t working and wisely nipped it in the bud before it got too far out of hand. I wish I had done that!
I continue to be impressed with how all of you express how this has effected your lives. I am grateful to all of you for sharing because as I said before it helps me to know that others were in the same boat.
Some of us were drowning, sinking fast and struggling to keep afloat but in the end survived.
Some caregivers are so young and caring for parents, grandparents, aunts, uncles, cousins, friends...I’ve read many different circumstances of this site.
Personally, I feel like kids who are forced to help care for their parents is the absolute worst. It seems like a form of child abuse to me.
There was a young woman from COA that came to my house that told me she cared for her dad since she was 6 years old! Her mom made her help. Poor kid having her childhood robbed from her like that.
Some caregivers are older themselves with health issues of their own. Think of the caregivers who developed health issues due to the enormous stress of caregiving and some have even died. That is truly heartbreaking.
Your transparency has made me feel safe sharing my heartbreaking moments because I know you have walked in my shoes. I am so very proud of all of you for helping others. It has encouraged me to do whatever I can to help.
I am very glad that I learned of this forum through a social worker, especially when I was a shut in caregiver but equally important dealing with the aftermath emotions. There is joy in feeling gratitude. It lifts my soul.
When I felt resentment for being bogged down in my full time caregiving days, it totally drained me both emotionally and physically. I had severe bouts of depression and anxiety. I truly feel like the weight of the world has been lifted off of my shoulders.
You know, I feel many of could write a book on the topic of caregiving, right? For those of us who have chosen not to be in the middle of the chaos any longer or perhaps never started caregiving in their home to begin with, I lift my glass in celebration 🍾🥂🍻🥃🍹🍷🍺🍸.
My mother had said for years that she couldn't live with me. I think she thought she was being hurtful. Did she not realize that there was no way I would ever have her live in my home?
In Oct 2018, she was hospitalized for 17 days, then rehab, then LTC in a SNF. Prior to the hospitalization, she lived by herself (I was the "Dummy Daughter Driver"). She had someone in to clean once a month. She refused any other paid help (she needed someone to help her with showering).
As I've written on here before, it was very difficult for me for just the ~6 hours/week I had to take her places. She and I didn't get along, and she made sure I knew how my time wasn't worth anything, how I had "something wrong in the head," etc. Society expects us to put up, shut up and offer it up. I refused.
I went to see her as little as possible when she entered the NH. Of course, I was called a lot by the facility. Only a few times did I actually make it to the 1x/week visit.
I can't understand how anyone would live with an elderly parent who needs caregiving. But then some people must have had a very different relationship with their parents. I would never put my husband through it!
His mother is still alive and refusing to leave her 2-story (plus basement) nightmare of an old house. He is one of 2 sibs not living in the same area as their mother (3 do live local to MIL). One of the daughters would expect only the best for her mother, and I can foresee her expecting the other sibs to chip in to hire help for her mother. We will not contribute to that. MIL got an unexpected inheritance, and blew much of it in travel. She made her choices!
As the daughter who did everything for her parents, I found I was not a caregiver. I didn't like having to be there for someone 24/7. Actually, Worried's response is how I felt. I don't have kids at home but I was in my mid 60s caring for a 20 month old grandson who I had since he was 2 months old. And he was going to Nursery school in a few months. Freedom back! Nope, I needed to take Mom in. I didn't want to do this. I have no patience. I didn't like the person I had become but just could not be "up" about the situation. My house is a split level and just not conducive to caring for someone who can't do stairs. I literally had to gate Mom in at night so she couldn't wander the house.
NeedhelpwithMom wrote my sentiments exactly. I was the oldest and the daughter. I feel that all I have done was care for somebody. I gave up working for 3 years in my mid 40s because my teen daughter had a baby at 16 so I cared for him. He was a preemie. I had my youngest at 35 so I was still raising one of my own. Oldest finished high school and went on to be an LPN and RN. She has done very well. Then my nephew. This is an ongoing thing. I hate the thought that I will be overseeing him for the rest of my life. Working on that. Then I babysat my other grandson (same mother), then Mom. Now my oldest grandson has epilepsy and can't drive so we drive him because his Mom has to work and schedules are not the same. I just want my life back where I don't have to worry about anyone but me and my husband. That when we make a decision to move or downsize that I don't have to think, "but what about nephew and grandson?" I have had to give up doing things with friends because I was caring for someone. Then there is my youngest brother. Now divorced and retired doing his own thing. My other one did raise my nephew, believe me he wasn't easy, and now dealing with a MIL who spends her money on scams. Its a horror show for my SIL and its effecting her health.
So, it comes to, what can you as a person deal with. What are you willing to sacrifice. Because once u taking caregiving on, its really hard to get out of it.
She detests all women.
I am not clinically trained.
I have no interest in giving up my life to serve others.
She has the funds to pay for A/L and that is where she is. As is my step father & his wife. Do a lot of running around for them as it is now.
I have paid my dues, taking care of my husband, aiding my father & cousin, I am
done.
(I deleted like 3 paragraphs describing the dumpster fire of trying to care for my in-laws. Just TMI.)
Anyhoo, I could basically see the in-law trainwreck coming and it WAS going to land in our laps no matter what. My 1 BIL and his family also lived nearby and he is a nice guy but only does things when you ask him - not proactive and pretty clueless as to actually solving problems. The other BIL lived in AZ and sent money unsolicited. Then there were 2 stepbrothers who lived out of state, but because their dad (my SFIL) was such a d-bag to them their whole lives, they weren't interested in helping but gave us permission to do whatever it took. SFIL never gave anyone PoA even after I made it clear I would allow the county to take guardianship over him and that he'd have no control after that. I guess he didn't believe me.
Since we ran our own business I had the ability to work on personal things during the weekday (read: calling social services, doctors, etc). I worked on caring for and eventually placing my in-laws for a solid 1-5 years almost non-stop while trying to do my job and raise my kids. I said I was "lucky" and this is because the family gave me carte blanche to make decisions and do things without resistance or questioning even though I was not my MIL's PoA (my husband and local BIL were). Every day I sent out emails and texts to the family (including the step brothers) so that EVERYONE knew what was going on, the effort, the decisions, the costs, EVERYTHING so that NO ONE could ever say, "I didn't know..." Every day that I did the smallest thing, they were notified.
The adventures with my in-laws taught me (the hard way) about aging, dementia, Parkinsons, how to take the cars away, dealing with social services, guardianship, nursing homes and what it looks like when people do not prepare realistically for their decline and exit. It taught me that in no way was I interested in hands-on caregiving for aging parents. That's why I love this forum, as imperfect as it is. If people find it at the right time, it's an enormous help and blessing to others.
MIL and her daughter (daughter lives 1K miles away) .. are very close, talk on the phone generally at least once a day if not more usually. And the daughter's requests, some of them ill conceived, a lot of them, and not realistic .. were flying in and landing in my lap to step to, routinely and arguments as to the validity of same, went unheeded. It's a no brainer.
The daughter can't/won't move here, and the mother wouldn't move there for her daughter to care for her. It's a no brainer.
Not wanting to spend the next decade or more of my life, in service to the situation . that and I want a life of my own to direct as to how I see fit .. I'm just not that selfless.
That and also a lesser factor, but nonetheless a real one. We are the only local offspring to what would also be my dad and my mother .. and I didn't want to set the precedent .. this is what one can look forward to ... Dorker will step in and take you in .. and take care of you.
And my life for the next 20 years or so, be that of a c'taker.
It’s hard when people don’t have the same internal body temp. I am like you. I get chilly too! I love to warm up my feet on my husband’s calves while in bed. His body is always so warm. Good thing he loves me because I have warmed my feet up on him for 41 years! Hahaha