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It's not always that easy megan2014. I saw a counselor for a year and he was getting exasperated with me for not following his advice to put Mom in a home when it was obviously taking such a toll on me. I am 66 but my mom has guilted me and manipulated me for so many years it's a very hard habit to break. She would cry and say she didn't want to go to a home, then remind me how much she had done for us. She never learned to drive so I have done plenty for her and taken care of her for years after my dad passed away while she was still able to live in her own home. Then you have friends and acquaintances telling you that it's your job as a daughter to do this and you should be happy for the extra time you are getting to spend with her. They are not the ones getting up all hours, constantly worrying about her falling, playing silly mind games, waiting on her hand and foot so they have no idea what they are talking about. It sounds so simple to say it's your choice and I would have said the same thing maybe - before I was put in this position. Parental guilt can be a HUGE millstone around your neck.
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I dont get it...In America, no one is forced to take care of their parents. I would like to know who is forcing you. If you cant or dont want to do this, there are assisted living facilities and nursing homes that are very capable of caring for your loved on. Dont blame anyone but yourself...its your choice.
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Being a caregiver for my mom for 2 1/2 years before we finally made the decision to put her in a nursing home has forever changed my perspective. I too have had people tell me, you're so lucky to still have your mom with you and she raised you so now you owe it to her to take care of her. Parents choose to have children and are aware there will be a period of time changing diapers and getting up all hours of the night and having to dress and undress and bathe their children. But no one sits there and thinks about having to do all of these things for a mother who reminds you over and over of "everything I have done for you". It's so true what ohdear who works at the facility said. They work in shifts so they can walk away from it for a while after their shift is over. They aren't as emotionally attached and don't have to deal with the many issues that can result in problems from the parent/child relationship where the roles have now been reversed. I felt much guilt and sometimes still do over the decision we made putting Mom in a nursing home where she has now been for 8 months but it was the best decision to make and I have not regretted it once. She has adjusted well and even though she still will say things to make me feel guilty I can now be the caring daughter I used to be instead of the angry/resentful/guilty/worn out 24/7 caregiver. My heart goes out to those who for whatever reason have to keep doing this. My hot flashes got so much worse during the time she was here and I was so short of sleep and felt like I had knots in my stomach all the time.
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"I know Jesus said we must carry our cross.....but for how many years are we expected to do so without cracking"

THat is the very reason why i turned my back on God - he tortured me all my life with multiple disabilities, abusive parents who tried to maim me for life - and then magically and supernaturally arranged the circumstances that i was forced to endure twelve years of coping, alone, with my parents' dementia - dad died in 2005, but God continued to magically and supernaturally arrange the circumstances that I had to cope alone with mum's dementia until mid 2014 when I, out of desperation, rebelled against God by praying to the devil for help. I then threatened the family doctor with legal action - and the rest is history. If only I had done it sooner - my own health would never have degenerated to the exstent it did with all the tumours on my spine getting worse - leaving me unable to walk or care for myself properly.
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Good comment, Jellylava. I would love to go for counseling, stress management courses, etc., but for the time factor involved. The problem too is that no matter how many "breaks" you get, the problems, history, and issues associated with caregiving an elderly, difficult parent are always with you on some subliminal level. I am fortunate in that I live in my own house and there is a lot of paid, in-home help. But my mom's situation is just very dominant - my biggest challenge is to mentally compartmentalize it so that it does not dominate my every thought and that I can develop the other facets of my life that I believe are part of my God-given plan. Still working on this part! :)
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Jellylava
I couldn't have said it better. For years we tried to get my mother to make decisions about her future (move to asst living, put some of her assets in my sister's name etc)
but she would not. Now after several bouts in the hospital where it became apparent she could not continue to live on her own, she had to go to subacute rehab and stayed at the facility in a skilled nursing bed. She, despite our efforts, would not plan for the future and for a time when she would need more help. she would not follow recommendations from her primary doctor about following up with consultants for some medical problems and now these problems have caused her to be in a situation where she is not a candidate for the proper intervention due to her age and advancement of the diseases. Now her anger at being in the facility is directed at us. Perhaps if she had made a plan, she would feel less anger.She might have felt that she had some say in what would happen instead of us having to make this decision for her. The outcome may have been the same, that is, she may have ended up in the skilled nursing facility anyway but she could have felt that she tried other options (her own) first.. You cannot take on the burden as your own. Nor can you blame them for what has happened. Each one of us is responsible for the consequences of our actions. It is unfortunate that my mom would not accept our suggestions for planning for her future and tried a few things before we had to make the decision for her. I agree that assertiveness training may be a good thing not just for dealing with parents but also just for daily living.
My siblings and I cannot sort out all of her problems- we do what we can for her. And I know the guilt is there but really, if you are doing all you can and communicate this to your parent, you have nothing to feel guilty about. That is easier said than done. I know.
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Oh yes... and now my husband has also just been diagnosed with Early-Onset Alzheimer's.
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It took me years to convince doctors that my mother was having dementia/Alzheimer's problems. Only after she had a car accident did they confirm that she had Alzheimer's. By then she was getting really bad with paranoia and lapses of where (and often when) she was. Long story short, my father refused to let her enter a nursing facility. That meant, of course, that I, as the only child, became her main caregiver for many years.

Soon after she passed away, my father had several strokes and now has vascular dementia and is so incredibly mean and hateful to me and his remaining sibling that we can no longer go near him. He is terrible to us, but pretty good around other people. He is in his 90's now and his doctor has allowed him to drive which is still another stress! I keep getting told that he is on the bubble -- not bad enough to go to a nursing facility but not good enough to remain home without help. I think he should be in assisted living.

Anyhow, I was pretty healthy, but the continued stress of all of this caregiving has affected me immensely and I now have developed Type II Diabetes at age 57 despite maintaining healthy eating and weight. Thank goodness for our local Office of Aging. They are a Godsend.
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Gosh..did i ever relate to what Phillis wrote. When you have a parent living too long it takes away your soul, your interest in life and you can't believe GOD would do this to you. I know Jesus said we must carry our cross.....but for how many years are we expected to do so without cracking and begging God for deliverance from this enormous burden. YES...I want to smack anyone that says .."Your mother took care of you and now you have to take care of her". This is so ridiculous. There is no comparison to a young child that you adore when you yourself are young to that of a decripid old person well into their 90's. When you are 70 and your never ending Mother is 97. IT IS A LIVING NIGHTMARE. Trust me...you can outgrow your need for a Mother. Anyone that would say differently is just being a big fake and lying. Unless the old person is independent and is happy entertaining themself.....of course. But, what do you do with a malcontent??
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Jelly, you are so right about needing assertiveness training. Now long ago, for the first time in my life, any time my parents were complaining about this or that, I would boldly say "living in this big house was YOUR choice" [they still live on their own].

I cannot be a carbon copy of my Mom nor my Dad and how they do things. Example, my parents use to go grocery shopping every other day hitting 2 or 3 stores on that day. Not me, it's once a week, one store... now I use an on-line grocery service. I still get grumbling about that. Then I would say "if you would have moved to that retirement village last year, you could grocery shop daily".

At least that makes me feel like I have control.... with a sprinkling of guilt on top.
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Assertiveness training might be good. Since so many here have been emotionally groomed for our roles, I suggest that you also read the thread about emotional blackmail. A therapist would be worth their weight in gold.
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To mylifematters and all others it may apply to like me - I wonder if assertiveness training would help us? It seems to be common among us that there is more loaded on to us than we can/should be dealing with. How do we deal with the guilt which makes us feel that we have to sort out all the problems our parent now has. They surely have some responsibility for life choices which brought them to their current situation and yet we feel that we should be the ones to take it on as our own burden. I know that actually going somewhere to see a counsellor would add to my problems, time wise, but perhaps there are some on-line courses on how to put ourselves first at least some of the time. Maybe I will do some research on the possibility.
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Yes, my mother created so much stress in my life with her illnesses, mental illness, schemes and constant self induced drama that 7 years ago while running to her side 700 miles away in the middle of the night for about the 20th time in 10 years, I suffered a rare heart condition that caused my heart muscle to become damaged and my heart's electrical system to shut down and I nearly died. I am now 100% paced, have already had 3 heart devices to stabilize my heart and will eventually need a transplant. Doctors say they do not know what caused this to happen, I was in excellent cardiovascular and physical condition when this happened. After 7 more years of her crap, I am even sicker and I feel like stress from 20 years of her BS has caused this This heart condition took my active life away and I will never be the same.
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A police friend of mine once told me that the danger of inner rage that is bottled up is that it can break the surface and sometimes causes a person to forget who is in the house with them. In the rage of the moment, sometimes this means the rage takes over and they do things they would not do normally. This is very frightening to see and I've seen it almost come to full fruit one time, but I got them some help before it did.

BTW, not to preach but if you look at the Psalms there are plenty of places where anger is expressed to God. God can handle your anger and knows it there already. So, got ahead and unload it like the Psalmists did. .
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Philis, I am sorry to read of how difficult this all is for you. I understand that you wouldn't want to harm anyone because of all your rage and frustration but if you keep it all inside you that's not good either. Is there any way you can get respite care for her for brief periods? I know that my salvation when I feel this way is to blow off steam with two good friends who will lend an ear and commiserate with me. In the past I have been able to do the same for them but I realize that not everyone is lucky enough to have people who won't be offended by anything you say. Another way for me to let out my feelings used to be to go for a long walk but even that has been difficult to fit into my schedule these days. I have noticed that since I have stopped making time to meditate my sleep has been more disturbed and with wild dreams that seem to have a common theme of being thwarted no matter what I do. Today I realized that I truly have to get back to my meditation even if it means that something else will be sacrificed. At least you have written to all of us to rant a little and that is good. I have found that being able to discuss things here with others and read of their similar experiences has truly helped and I value all my new 'friends' here. I send you many hugs.
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Yes I believe my health has deteriorated a lot in the 5+ years I have taken care of my mother at home. Biggest thing is over time is you loose your soul, all interest in life, and get angry at God as well. The stress torments your mind into insanity itself or at least short periods of it. If you don't stay inside on those days you might do harm to someone else very easily just to release all that wants to be lashed out from within upon all the injustice in life.
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Yes, sstiqmama, it's best to ask the specialist because he will use things like exercise, being able to walk a distance, lung function tests, etc. Just tell him you'd like to know what stage your Mother is in regards to BODE or GOLD but I've been told BODE is more on track. I wish you the best, hun.
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Ty, Dixie and i i don't mind you begin blunt with me. I will ask my mom's pulmonary doctor about the staging. This caretaking is a tough job, but someone's gotta do it.
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Reading through everyone's answers makes me laugh, cry and reconsider the daily challenge of having my loved one in my home. We have been using proceeds from a LTC policy to pay for my mom's care and I am starting to think that I would consider paying for care when the "free care" runs out!

We all have to make our own decisions. I appreciate hearing the comment that caring for an elderly parent isn't the same as what our parents did for us as babies. Children have a more promising future and caring for aging parents can depressing. I have to remind myself. I am just trying to make "happy memories" for myself and my kids while my mother is here on this earth and it does make you think about your own "end of life decisions". I try to continue to keep my focus as we go through this process.

I have heard many saying that if we feel that we are being FORCED to be a caregiver - it is our own guilt working on us. But many of us have worked through this issue and found that our "guilt" is the result of selfish and abusive parents. I have experienced it both ways....... what type of parents do we hope to be to the next generation? I have tried to shelter my kids from the "job" I do as my mother's caregiver but I am afraid it is a legacy I need help not to perpetuate.

Bless you all and bless those we care for.......bless the people at the facilities who are paid to do what we are doing for "free". I am afraid there are no easy answers to this question. Caring for yourself has to be your top priority! Minor things like losing sleep and major things like broken backs and stress. If you have every sat through the emergency demonstration on a commercial airplane just before take off, you know. You must put the oxygen mask on yourself before assisting small children and seniors. If you don't take care of that first, everyone dies. Sorry to be so dramatic but some of us forget this simple fact.
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Hi sstiqmama1, you would have to ask her lung specialist what stage. They go by various things related to her physical self. You can read here about the stages and the GOLD and BODE staging. They use the two in order to make the diagnosis about the stage. I was told that the BODE is better in tune with the diagnosis. Next time they do a pulmonary function test you can find out then. Or perhaps her last test just ask the doctor. I hope your Mom doesn't suffer either. I was beginning to have real issues lately because I couldn't bare knowing it was like drowning. Sorry to be so blunt but that's what the doctor had told me.
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Private1, you are so correct on your above post. I understand what you are saying.
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Though I was never in that exact situation, i've dealt with something similar that took away from my own life. What I did when I sat with my elderly friend was to do everything that I had to do, especially with appointments. I explained to my elderly friend when I was going to go and do something and I actually did it. There's a time to sit with someone at a time to get away to yourself. He didn't want me to go home at night, but I just can't sleep very well on just any mattress. This is a time when I had to put my foot down and just go home, especially knowing my friend had home health care that came in during the week. I wasn't going to sleep deprive myself court his selfish gain. There comes a time when you must take care of yourself and do what's right for you. Had I not drawn that line, I think I would've likely been where you are now, because I'm not about to let anyone walk all over me no matter who they are or what their age. I'm just glad that someone finally stepped up and put him into a nursing home where he belongs since he needs round the clock care.
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Dixie, sorry for your loss. My mother gas severe emphysema and COPD. i don't know what stage. How do they stage it? She's in bad shape and is on oxygen 24/7 , she gets out of breath after only a few steps. The only time i can get get out is to go to the doctor. I use a transport chair for that. My mom is 78 and i hope she doesn't suffer toi long and passes like your mom.
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DixieDarlin, I am so sorry for your loss.
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Thank you all. Yes, it was unexpected. She had been in the hospital a couple of weeks ago C-Diff, however we followed up with the doctor and he said he believed she was over it. I'm not sure what happened. I went over to check on her and she was sitting in her chair and had departed this life. I am so thankful because I think she nodded off and passed. I was worried with the stage 4 Emphysema that she would suffer to breathe.
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DixieDarling I am so sorry to hear of your Mom's passing. Sounds like it was unexpected. God Bless you!
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I think I am more tired, and more tired all the time. I have severe sleep apnea, treated by a machine (lord, I miss the sweet night air). I think the prospect of things not changing and dreading how much worse takes its toll as well.
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Dixie Darlin', I am very sorry to hear of your mom's passing on Monday night. Did you have an opportunity to say goodbye to her or was it rather sudden? Now that your mom is in a much better place, you can catch your breath and slowly begin to heal. God bless you and restore you.
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Ok, anyone who is losing ("spending ") their health taking care of their elderly/infirm parent... put them in a nursing home. It's you body's way of telling you, YOU CANNOT DO THIS. Please listen. I can talk because I've been there. My mom has been in a nh for 9 months, and I still have not gotten my health back. I'm not saying, "it's not worth it," though realistically, it may not be. I am saying, "it's not necessary," so why are you doing this to yourself?
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Hi 1golflady, I completely understand. That's the way it started with me and then my health took a dump. It was stressful in the very beginning simply because I had lived alone for so long. I was also finishing up my Master's Degree and working. I think I just had an overload and well things got out of whack.

Unfortunately, as I type this my Mother passed peacefully in her sleep on Monday. While things will slow down now, I will miss her. Well already miss her because my brain keeps telling me do this, call now, go get, etc. I know you all can relate. You hang in there. Make sure you "find" time for yourself no matter what.
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