orphan - the short answer is that you can't. You can try to have a family meeting and ask them for help in specific ways, but if they don't want to you can't change them. It is hard when other family won't help, but it is not rare.
Good beginning concept. I believe that the care-giving experience is an individual one. I've been wresting for three years with almost total care of my dad who is now 92. He can move somewhat, but I can't leave him alone or in the care of a stranger in our home, especially if they are nosy. Care-giving homes cost significantly more money than he or I can afford. Consequently, I do it all. It helps to pray believe it or not. I feel less alone because this experience also shows who your friends are. When asked how I'm doing it is never followed by an offer to sit with my dad for hour while I run an errand or do something for me. Don't ask me how I'm doing, I'm managing and that question just inflames my desire to tell you what I think. You wouldn't like the truth. The truth is unpleasant for others; you will never hear from them again. I no longer care if the place is a bit dusty; dirt not welcome but I don't clean as often as I did. Bathrooms and bedrooms are daily cleaning objects, the rest of the apartment isn't. Dishes go into the dishwasher and the kitchen is clean, but the remaining time I take my dad for walks/rides or if he's watching TV I take care of bills and the like. I have found just about every service that will deliver to home and I use it. Time for me isn't there, but I carve out time for my things by establishing a regular TV time during which I try to learn a new craft, crochet stitch, or just doodle. I'm teaching myself to draw during this time. Believe it or not, this helps. It's a bit of a challenge for me but I am there for my dad. Those who care to visit are welcome, but I'm not running after you or begging. We are managing and we're learning who our friends really are.
Why does an afternoon off not cut it for me? I can't stop thinking about my upcoming responsibilities, and I end up ruining my time away. BTW, that dog-gone texting! It's a blessing and a curse that the caregivers LOVE. Ugh! Any suggestions? Background in a nutshell: 24-7 care for Grandparents (both aged 95) at their home. I have morphed into a working manager, of sorts, of a caregiving crew of 8-ish with a family and 3 kiddos whom I home-school. I feel like a mess...
My “hit the wall” moment came one evening shortly following my dad’s car accident a month ago. With his car now gone, and his life drastically changed, I could feel the mounting tension and despair in the house.
Once the dust settled and the related logistical matters were satisfied, it became apparent that Dad was going to need more attention than ever before. We work, and I’d now have to worry about Dad being home alone, with memory issues and increasing chances that he’ll fall or mismanage some sort of endeavor such as using the stove.
No matter how I have encouraged him to consider getting on the shuttle to the senior center, he has resisted. Even the lure of playing pool again and getting a meal there hasn’t been enough for him to accept a ride to do this. He wants his own car, and no amount of reasoning with him has dissuaded his intentions. I know that if he cannot figure out where to file his latest bank statement, how is he going to negotiate the challenges of owning another car? His memory loss had contributed to his getting lost many times, and that in itself was dangerous, and inwardly I was glad that he could no longer drive.
So anyway, I’d come home from work and saw how upset Dad was, and that he hadn’t eaten anything, and hadn’t taken his medication (all within easy reach and with instructions). I knew then with a sense of dread that I couldn’t handle the situation alone anymore. Too much had happened too fast. Things would get progressively worse with not only the ADLs, but with Dad’s entire mindset. Neither I nor my husband are equipped to deal with it, especially with our busy life and need to work for a living.
That night, I confided to some supportive friends on Facebook about Dad’s accident, asking how to approach “taking the car keys away” and the fallout that was sure to follow. One friend suggested getting in-home help, knowing Dad is already under VA care for his medical needs. I realized that it was either reach out, or BURN out.
I got on the phone and left a message at the VA Caregiver Help line. I got a return call the next morning, and that set in motion a series of events that will lead to Home-Based Health Care, and in-home aides (10 hours per week), provided by the VA at no copay. I knew I now needed the case management and more focused attention for Dad, particularly with counseling and personal care. When Dad’s application was approved within just days of submission, I started getting calls from coordinators poised to assist.
I was overwhelmed with gratitude and relief. Though overseeing it all is my responsibility, I feel more at peace knowing help is on the way.
I am where you were. My partner has Huntington's disease and although he does a lot of things himself, he cannot be left alone for any length of time for dear of falling and because his mind isn't quite right anymore. I want to get some relief and have help come in just 1 day a week so I can have a life again but he refuses to have anyone come in. I was wondering how somebody else would handle a situation such as mine. I am also wondering how you are doing now DT?
I am learning that you just can't share your feelings and frustrations with everybody. You get "You didn't bathe and feed yourself as a baby, your parents did it, it's your turn", "why don't you just get help?", "you don't have a life", "you need to tell your sister you need a break", "you know, this could last 10 years", etc, etc Really?, like I hadn't thought about any of this. The only true understanding and respect I've gotten is from my Caregivers support group. I strongly recommend it. People that are not there just don't understand.
I was a caregiver to my immediate family since 2007 and although it is intermittent now, there were years where it was a daily duty along with work, running my own home, business, and trying to be a wife and doggie mom. Well now I have just had a removal of a tumor and will be on treatment and may possibly need other surgeries myself. It was an exhausting road and the people Ihelped do not remember and often now are rude and show no respect. The last time my family was incapacitated I told them that I could no longer do this and that the next time I would have to call in others to help. That was before I got my own health diagnosis.
I would suggest to anyone call in others to help from the beginning instead of trying to do everything for everyone yourself. You may find as I did that they vehemently reject it....{my family members would not go to counselors, would not allow home health aides or housekeepers in or others to drive them to appointments, and were adept at manipulating with guilt and various other emotions. Stop being available for everything and they will have to take the care from others. You can always stay informed but with a little distance. Call a few times a week or visit occasionally. You will save your own life and health in the end.
I have been a long time lurker on this site. I read daily about all the lives that are ruined, scarred, families wrecked or crippled by managing elderly, sick, or needy parents. After careful consideration I offer three points to ponder:
1. If you are one of these burnout, used up caregivers, How long do you want to live?
2. Do you think that people are living beyond a natural life expectancy nowadays?
3. Who is to blame for this state of affairs? And what is at the root of it?
Anne-Marie, it's too bad that articles don't have a "Give a hug" icon either next to the author's name or at the end of it. So this comment is your "hug." :) Although the lady-friend for whom I'm providing care is one of the least challenging in terms of her medical/mental condition, the fact that I'm (thus far) a one-man-band means that if I took care of every item on her request list, I'd get nothing done for myself - including bills.
I live with her (I'm one of those 2008-09 foreclosure refugees). My New Year's resolution is to move out because I consider it a fate worse than death for 2013 to end the way 2012 did. That's not going to happen (death, that is). I'm engaging professional help (psychiatrist, counselor, etc.) who are set to work with me on starting down a new path while keeping from leaving my loved one "high and dry."
I think if we are all honest - most of us harbor 'some anger' at being so responsible for another person - especially if they are incapable of giving anything back. I get positive feedback from my husband and kids but negative feedback from my MIL.
Even though I know in my heart that she cannot help growing old and possibly cannot even help her lousy attitude - but it is wearing me down just the same. And when she is having a bad spell - and sometimes those last a a while - I feel trapped and angry.
The fact that her other children do not help in ANY way and show no consideration for their mother or myself (the caregiver) makes me angry as well.
We have to find an outlet for this because it is unhealthy. So, I take walks, I force myself to do this for my own benefit. It helps to clear the head and it is good for my body. Anger is a negative emotion. We need to do things for ourselves - be proactive - make time for a good book, a walk, a long shower, a phone call to a friend, a movie, a meal out with friends. We HAVE to have something to look forward to or we become just like our parent - negative. It will eat us up. Don't let that happen. MAKE yourself to what is good for you. Eat well. Take vitamins. Take care of yourself - no one else will.
Looks like there are a few of us who are unable to sleep this morning. :0) Take care all of you. Don't lose hope.
When I say that I do my caregiving from a distance, I mean that I limit as much as possible my 'alone time' with my MIL. Do what you can to accomplish this if needed.
Stephen, From what I have seen the people who do the best when the caregiving years are over, are the ones who give but who keep the important things in their own lives going as well, like interests, job, other relationships, etc. I think those who have mentioned caregiving " at a distance" also, have a good point. If you are giving care to someone who is constantly berating or criticizing, it makes good sense to let someone else come in and deal directly with them, rather than trying to do everything alone. Even it that is not the case, It couldnt hurt to let others come in to do the housework, personal care, grocery shopping etc so that we actually have a time to rest and keep some balance in our lives.
As I'm reading this, I realize that it's not only my father's anger at what he can't change, but maybe my anger at what I can't change as well. That sounds horrible, but if I'm honest, it's true.
emjo - it sounds like things may have to stay the same for your for a while - I would just limit my visits - keep them as public as possible - take someone with you so you aren't alone in the car - if possible. I know the 'dread' you must feel - it can almost make you feel sick.
It sounds like your mom is in a good ALF and they are caring for her well. You are keeping an eye on things - which is good. You care for her as much as possible under the circumstances. You are doing what needs to be done for 'both your sakes.' ((((((hugs in return!!!)))))
thx old codger - I live in another city and don't visit as much as I get older myself - I am 75, and she is 100. She is in an apartment and the aides come 4 times a day, but they don't stop her incessant complaining. The insults can come when people are there - but she is careful who hears her. She insulted me in a room full of cousins, but they didn't hear what she said. She doesn't care about the aides. The nastiest stuff comes by email. Last year she dragged the experience we had around my youngest son's death bed into her complaints that she didn't get as good treatment as he did. When I do visit, I prefer to pick her up, and take her out for a meal, so that we are in public, except for the time in the car.That makes it easier. I am afraid part of my problem is that the hurts from the past resurface - not that I haven't forgiven her, I have, but I haven't forgotten, and the old pain comes up. Jeanne Gibbs quotes from a book by psychologist Pauline Boss who says that people who have been abused all along should not be direct caregivers of their abuser - they should see that their parent is well looked after, but also protect themselves from further harm. That is what I am trying to do - protect myself from further harm. Sounds like the daughter you mention above is the same. Each time she gets nasty to me, she inflicts more harm. That is why I want to give up POA, as the few times I have made suggestions to her regarding her finances, when I was concerned about them, she has become nasty. I know it is more work, and I don't need it. My sister is named as my back up and, if I gave it up POA would revert to her. My concern for mother is that my sister has $ signs in her eyes (mother's phrase) and that if my sister had POA, I am concerned that she would abuse it for her own benefit. She has told her own family that she intends to get all the inheritance - her portion and my portion. It boggles my mind. She has used mother for years, visiting and paying no expenses, and not helping out, going on holidays with her, and mother paid. Finally mother complained to me about it and I told her it took two, and she did not have to pay for my sister and her husband when the three of them were on holiday! Both my sis and her dh had good paying jobs BTW. I told mother to clearly state to them what she would and would not pay for -and things did change. But when my mother moved to an ALF, my sister came and visited and didn't lift a finger to help- with anything, but sat and watched the rest of us. It is appalling. So, I am not yet at a point where I want to leave my mother to my sister's devices. One day I may be, but I would suggest to mother that she appoint someone professional to have POA rather than my sister. In fact I think that would be best for all. My sig other says he would help me do it, if it is ever needed -so far it is not. He understands her pretty well, so that may be my best solution - let him deal with her. Wishing you well too - this is not an easy road. ((((((hugs))))
Sorry, emjo - I meant 'ask' one of the aids to stand close by while you visit with your mom. That could make a difference. Wishing you well.................
I remember reading another post 'somewhere on this site' about a daughter who only dealt with the FACILITY - she did not deal directly with her mother. That is sad - but only you know if it is necessary. We just don't know what another person feels and so often NO ONE knows what we endure - because the person is very good at 'being one way with me and another way with everyone else.'
I just make sure now that I am never alone with my MIL. That way - she doesn't say anything hurtful. She only does that when we are alone and now that we are no longer ever alone - that has stopped. Of course, it doesn't stop her from saying hurtful things 'about me' to others on the phone or when they visit, etc. I can't stop her from doing that. THAT IS WHY OUR RELATIONSHIP IS BROKEN - but she is in denial. Too bad for her.
Being executor or POA isn't all it's cracked up to be either. It just means more responsibility. Do what you can and should for your mom - see that she is well cared for - stop in and check on her 'from a distance' - she doesn't need to know you are there. Just make sure she is doing ok.
Remember, too, that it is anger at what they cannot change (old age, loss of independence, health, etc.) that makes EVERYTHING worse. Some people just don't deal with loss well. I just pray I am not like my MIL when/if I grow that old. Take care of yourself and take care of your mom in whatever way is necessary. Is there a way to visit her - but never be alone while there? You could even as one of the aids to be close by - that may help, too.
wow 0ld codger - much of what you wrote hits home big time
"We need to be honest with ourselves and know our limits - and even though I know that my MIL may not be thinking clearly - it doesn't change what she has done to me emotionally and physically and I knew I had to put a STOP to it. My doctor said she has 'chosen' me as her target. So, I guess you could say I am the 'chosen one.' :0)
She is still in complete and total denial - thinks that 'I am not dealing with things very well.' :0) "
I am worn to the bone emotionally from a lifetine of dealing with mother and her borderline personality disorder, and narcissism, My father and I have been her targets all along. I agree with this statement - I feel that NO ONE HAS THE RIGHT to abuse another person - whether old and sick or not. And everyone has the right/responsibility to protect themself from abuse,
After the last episode of nastiness ( she told me she bever wanted to see me again - over a trivial ihcident - and then a week later wonders why I am not in contact, I am about ready to cut contact altogether, She is well looked after in an ALF, and I would never see her not well looked after, but I do not have to have social contact with her for that. She has already threatened to give someone else the job of executor if I will not contact her - fine with me, and she can give POA to someone else too for that matter. I have pretty well had it!
oldcodger2, It is good that the dr was open with you n letting u know what needs to be done however, some dr's don't give such a heads up. I do agree what u said about, "I say DO WHATEVER NEEDS TO BE DONE to prevent yourself from having a stroke." You should NOT risk your own health for you have your own life n you have a CHOICE. Also, if someone choose to continue care n if u can afford a respite break by searching then get it by all means for the break is well needed. Some r very expensive like $15 bucks n higher a hr. However, through researching for help through organization, I was lucky to find a place that offer respite break for 22.00 bucks for 4hrs n that is pretty good along with a hot meal provided. Plus, I was able to get on a list from the Alzheimer's Association in my local area where they have funds now that help pay for some of the respite break!
The lifeline necklace n separation is another great choice n that is if they don't need 24/7 care like my mnl whom has moderate AD. If I left the mnl alone too long, she would probable have the house burned down or lost somewhere. It does depend on someone's situation n the person they r caring for too.
Care-giving is NOT easy n you should not have to deal with it if you do not want to for everyone has their own life to live n a choice. Their another alternative n that is placing them in a NH or assisting living for their best interest n so that he/she can live their own life without killing them-self n going broke n the process.
It was great that the dr told u the facts n I wish all dr's would do that too but unfortunately that doesn't happen half the time. So, yes, hitting the pillow, screaming to get your frustration out so that you don't take it out on anyone is temporary but it is a start.
Everyone's situation is different n unique n that is why this site is a great place to come for getting different advices. That way you make your own choices for it is your life n you do have a choice n remember we r not specialist just normal everyday people, sometimes. ; )
I had typed a nice long post and it went POOF! Ya gotta love computers!
Here goes another try. I will just say that I think eventually MOST caregivers are going to be dealing with a very ill and a very angry charge - someone who is depressed due to their losses and unable to deal with their anger and rage and so they take it out on the ONE person who is there for them - THE CAREGIVER!
I do believe it would take a SUPERMAN/WOMAN to deal with this day in and day out and not break down. It just plain wears you down to be WITH someone who is negative, depressed, belligerent, uncooperative, etc.
For me - the ONLY way I can handle this is to get away from it regularly. Sadly, these breaks didn't come soon enough. Eventually I had plenty of my own anger to deal with - a LOT of anger at the other siblings who were perfectly willing to 'sacrifice ME for their mother.'
Yes, screaming into a pillow or pounding on one helps temporarily and sure beats taking it out on a mailbox - but I can certainly understand how that can happen! Most of us can.
Sadly, for most - respite isn't a 'given.' IT COSTS MONEY - and often MORE money than one can afford - even when your sanity is at stake. But, somehow, you have to be able to get a break - the longer, the better.
The least a person should have at their disposal is a Lifeline necklace for the elderly person - and make sure you ask for the cheapest rate (we paid nearly $50 a month for 2 years before I told them I had found someone cheaper and then they miraculously said they could offer the service for $29 a month!!) So, ask for that $29 a month right off the bat and don't back down! That way, if your parent is well enough to at least push that button - you can leave the house for a few hours and know that help is just a push of a button away.
THEN schedule a long weekend and call on family and friends to step in. Tell them it is absolutely necessary and BEG - see if they will step up to the bat. (Make sure you can cancel your reservations without penalty - just in case begging doesn't work :0(
For us - the day care is just too expensive for what it is worth and a few hours doesn't help me that much. They want $100 a day - it does include meals and pick up/drop off - but that is quite a bit. They want $30 an hour for housecleaning. The same for a bath. So, I do the cleaning, she does her how bath - thankfully, she is strong enough for that and she has a nice walk in shower with heat, seat and rails and handheld shower
Thankfully, right now this minute - my MIL can bath herself. I don't HAVE to do ANY hands on caregiving. I know that could change at any time - all it will take is a health crisis - which she has regularly.
But, for now, I clean for her when she goes to the doctor or church. I make meals and my husband takes them to her. I fill her med boxes and she is able to take the meds (most of the time - she forgets a couple times a week). For now - and as long as her health holds - my caregiving is done at arms length. I have very little if any personal interaction with her - my husband deals with that.
I know this may change if her health fails or if she is hospitalized (which happens once or twice a year). But, for now, I don't have to see the dirty looks or hear the snide remarks and it has done wonders for my emotional well being.
I am also blessed with kids who will step in and help with their grandma from time to time and Church friends who do the same. We save them for a real break once or twice a year. One friend does meet my MIL at the foot doctor and escort her in/out every 12 weeks. My hubby takes her to her other more 'personal' doctor appointments. So, far - this arrangement it working.
I say DO WHATEVER NEEDS TO BE DONE to prevent yourself from having a stroke. Thankfully, my doctor finally told me WHAT I was dealing with here. That my MIL is unable to handle her anger and rage at all of her losses - and her losses are staggering - as they are for MOST elderly, sick people. She was taking everything out on me - and then denying it (she still does this).
We need to be honest with ourselves and know our limits - and even though I know that my MIL may not be thinking clearly - it doesn't change what she has done to me emotionally and physically and I knew I had to put a STOP to it. My doctor said she has 'chosen' me as her target. So, I guess you could say I am the 'chosen one.' :0)
She is still in complete and total denial - thinks that 'I am not dealing with things very well.' :0)
I feel that NO ONE HAS THE RIGHT to abuse another person - whether you are old and sick or not. I know that there are situations when an older person is not responsible for their behavior (as with dementia/ALZ) - but that is NOT the case with my MIL. She does NOT have any form of dementia. The doc says it is just plain anger!
I am just grateful that my doctor finally told me what exactly is making her this way and he also told us we need to 'remove her from our home.' That is not possible - so we have 'separated' - or at least I have. She can no longer just walk into our home and say or do as she pleases.
So, if all you can do is put a lock on your bedroom door - do that. Have a place of refuge - keep it neat and clean and pleasant. Buy flowers and keep them on your dresser or a houseplant you can care for and talk to :0). Play your favorite music. Light a nice candle (watch it though :0) Read. Do this for yourself!! Buy a box of Calgon and use it! Put yourself higher up on the list. Pray for a better day. It will come.
ClosetotheEdge, so sorry that your dad being a butt. You r fine for you r going through a lot with the care-giving stuff. You r only human just like everyone else here. It takes a lot to be a caregiver n you hitting that mail boxes is not doing you any good. Can u at least hit a pillow or crank up your music n your car n just scream!!!! I have done that myself n it does help to get the frustration out of your system n not on the person or yourself. Get it out of your system n try to remember that, dad is not all their with the health problems he is having. It does sound like he is taking it out on you n I am truly sorry that is happen. Unfortunately, a lot us caregivers get that great attitude just for being the caregiver. Their is always assisting livings n such to check out for him if it becomes that your health or his health is not doing good or u just cannot handle it anymore. You have to be able to take care of yourself for if you don't then who will? You still have your whole life ahead n you need to live it. I know this is easier said than done, but please Try not to take his crap seriously. You r Normal just like every other caregiver on this board. Search for some respite break time for yourself n u will be glad that you did.. "Agency on Aging" is a started n they can hook u up to some resources. Their price for a day of care-giving from them for us was way out of my budget because they based it on all the gross pay in the house. However, after they did an assessment they did have other places that I could try n a bit cheaper n now my mnl goes to a church that offers 4hrs a day for $22.00 bucks a day with a meal. I can only get her to go once a wk but, its better than no-break or I would be going off my rocker. So, welcome to the funny farm as someone else on this site says. ; ) Im not sure but you might could call this 24 hr hotline for Alzheimer's n they may be able to refer you to another hotline that deal with caregivers that r taking care of an elderly that has had a stroke. Oh, Remember to breath.
Need Help Anytime? 1-800-272-3900 Alzheimer's Ass.
oldcodger2, you gave great advice n yes, you both should seek if yall both can get some breaks-Respite care. YOU BOTH can go to this site n click your state for the "Aging Care Agency" to see if they can help get both of y'all with some sort of Respite Break like I mention above to ClosetotheEdge. Here is the website.
StressedStpete n those taking care of someone with Alzheimer's, here is a website that offer support n 24 hotline too. Not sure is he living with y'all or r y'all living with him. You can consider about assistant living n their may be a way to get Guardianship if he was diagnosed with Alzheimer's. I'am not sure if it has to be in a certain stage. A lot of the stuff you have mention was crap I was going through with my husband's mom that I call the mnl other call it mil. I still deal with some of the stubborn stuff but not as bad so much n not sure if its because I have started to read n educate myself about this devastating disease or I am getting a bit mellow with the mnl? I think its the education to help understand n deal with some situations n I said, some. ; )
I do hope this helps all of y'all at least a little. Keep us posted on how y'all r doing n remember to don't sweat the small stuff n breath.... That we r all only human.
'Close to the Edge' WOW, you have just written what I would have written. I am sick and tired of the only one that wants to truly help my 90 yo father with Alzheimer's but he is turning against me. I know it is the disease but I am sick of the guilt trips, the accusations, the sneakiness and basic BS he dishes out on a regular basis. He is so negative about everything! I know he is depressed but I cannot help him and he has revoked my POA so I cannot even work with his doctors. No one else wants the responsibility. He wasn't much of a father to begin with but somehow I ended up with him and don't know what to do with him. I have no advice for anyone as I have no idea what I am doing or where to go next.
I have a question though, what things for him to do can I suggest at home to try and get him out of his funk? He works puzzles but is isolating himself more and more and hence getting grumpier and more depressed.
Nothing is wrong 'CloseToTheEdge' that a nice long break wouldn't help. Any way to get away for even a short time? Anyone at all you could call on and beg some help from? Anger is a good sign of depression - been there, done that. It just isn't easy being the ONLY ONE and never being acknowledged or helped. You need some kind of help. If you can't get away or can't get someone to help you - then you need to TALK to someone regularly. I know I should do that too. I should follow my own advice :0( But, at least things are manageable here now - for a while. Hope your hand is ok - the mailbox can be replaced. Hope your day improves. I am sorry you are dealing with this - WE ALL KNOW IT IS HARD.
Ty lildeb! Today I left my house crying my eyes out (hubby was with dad, he can never belief alone). My da had cussed me out once again. I am a very mild mannered person....yet I punched my mailbox so hard I went flying. What is wrong with me?
P.S. I consider this place like a ciber family, a family I never had n I hope u two feel the same n can get some peace of mind, body n soul. Welcome again. ; )
Darn, I type up some stuff n lost it. so here it goes again.
oldcodger2, It does seem that her youngest child is a spoiled brat or just don't give a sh_!. He does sound very rude by not giving a curiosity call to let you know he is coming.What would that hurt or maybe he's afraid u might ask him to bring or do something for his mom n that is why. You know those type just don't like to do anything that is inconvenience to them once in awhile. Of course it don't suppose to matter to us everyday, yeah right! btw, dump away for it does help some. I am sorry he is such an a$$. Try to not let him bother u for it seem their is no changing in someone that can care less. You r the better-caring person. Take every break u get a chance n remember to take care of yourself. ClosetotheEdge, You r not alone with this for their are tons of us in similar situation like yours. Please come back n talk, vent n scream if u must for it helps relieve some of the tension. It always inconvenience for those who hardly lend a helping hand. I know a lot of us are in those same shoe's. The both of you just hop on aboard n feel your way through this helpful site. Read some others post, talk n vent. for u will see you are Not the only ones dealing with similar situations. Check out the blue areas under "Caregiver Support n Caregiver Forum." Welcome to the site n please come back n let us know how you two r doing. I hope both of y'all r able to have a brighter day today.
Talk, share? No one cares..unless of course you ask for help and it might inconvenience them. I have NEVER felt so alone in my life. I have cared for my father for a year and a half. I am engulfed by the guilt of a daughter that just can not do this much longer. I know I didn't answer anything here but I am mentally and physically.....I give up.
Thanks lildeb - it was just ONE OF THOSE DAYS............
Yes, we will get a break soon. What I mentioned in my previous post is that I go to a lot of trouble soliciting and scheduling my kids and grandchild to visit and bring meals and I have solicited about a half dozen friends to help by calling and visiting during the day - it is a lot of work to do this - but they are willing and that way we can actually 'relax' while we are away.
Trouble is - her youngest just 'shows up' and 'screws up the schedule' without caring how inconvenient it may be to anyone else. He did this the last time we left and it sounds like he plans to do it again and it is just FRUSTRATING.
He basically IGNORS his mother 99% of the time - but if he decides to just 'drop in' he is JUST WONDERFUL - to come and see her when he is SO BUSY.
He won't answer my emails or phone calls - won't even tell us if/when he is coming - even though I have asked. He is just so absolutely RUDE. A real piece of work.
Raked leaves and got most of this out of my system. Her youngest child is just sooooo infuriating to me. Gotta let it go, gotta let it go, gotta let it go. Thanks to this forum - a dumping ground for a lot of frustrations. :0)
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Improving Caregiver Well-Being
Background in a nutshell: 24-7 care for Grandparents (both aged 95) at their home. I have morphed into a working manager, of sorts, of a caregiving crew of 8-ish with a family and 3 kiddos whom I home-school. I feel like a mess...
Once the dust settled and the related logistical matters were satisfied, it became apparent that Dad was going to need more attention than ever before. We work, and I’d now have to worry about Dad being home alone, with memory issues and increasing chances that he’ll fall or mismanage some sort of endeavor such as using the stove.
No matter how I have encouraged him to consider getting on the shuttle to the senior center, he has resisted. Even the lure of playing pool again and getting a meal there hasn’t been enough for him to accept a ride to do this. He wants his own car, and no amount of reasoning with him has dissuaded his intentions. I know that if he cannot figure out where to file his latest bank statement, how is he going to negotiate the challenges of owning another car? His memory loss had contributed to his getting lost many times, and that in itself was dangerous, and inwardly I was glad that he could no longer drive.
So anyway, I’d come home from work and saw how upset Dad was, and that he hadn’t eaten anything, and hadn’t taken his medication (all within easy reach and with instructions). I knew then with a sense of dread that I couldn’t handle the situation alone anymore. Too much had happened too fast. Things would get progressively worse with not only the ADLs, but with Dad’s entire mindset. Neither I nor my husband are equipped to deal with it, especially with our busy life and need to work for a living.
That night, I confided to some supportive friends on Facebook about Dad’s accident, asking how to approach “taking the car keys away” and the fallout that was sure to follow. One friend suggested getting in-home help, knowing Dad is already under VA care for his medical needs. I realized that it was either reach out, or BURN out.
I got on the phone and left a message at the VA Caregiver Help line. I got a return call the next morning, and that set in motion a series of events that will lead to Home-Based Health Care, and in-home aides (10 hours per week), provided by the VA at no copay. I knew I now needed the case management and more focused attention for Dad, particularly with counseling and personal care. When Dad’s application was approved within just days of submission, I started getting calls from coordinators poised to assist.
I was overwhelmed with gratitude and relief. Though overseeing it all is my responsibility, I feel more at peace knowing help is on the way.
I am also wondering how you are doing now DT?
Well now I have just had a removal of a tumor and will be on treatment and may possibly need other surgeries myself. It was an exhausting road and
the people Ihelped do not remember and often now are rude and show no respect.
The last time my family was incapacitated I told them that I could no longer do this and that the next time I would have to call in others to help. That was before I got my own health diagnosis.
I would suggest to anyone call in others to help from the beginning instead of trying to do everything for everyone yourself. You may find as I did that
they vehemently reject it....{my family members would not go to counselors, would not allow home health aides or housekeepers in or others to drive them to appointments, and were adept at manipulating with guilt and various other emotions.
Stop being available for everything and they will have to take the care from others. You can always stay informed but with a little distance. Call a few times a week or visit occasionally.
You will save your own life and health in the end.
1. If you are one of these burnout, used up caregivers, How long do you want to live?
2. Do you think that people are living beyond a natural life expectancy nowadays?
3. Who is to blame for this state of affairs? And what is at the root of it?
I live with her (I'm one of those 2008-09 foreclosure refugees). My New Year's resolution is to move out because I consider it a fate worse than death for 2013 to end the way 2012 did. That's not going to happen (death, that is). I'm engaging professional help (psychiatrist, counselor, etc.) who are set to work with me on starting down a new path while keeping from leaving my loved one "high and dry."
Even though I know in my heart that she cannot help growing old and possibly cannot even help her lousy attitude - but it is wearing me down just the same. And when she is having a bad spell - and sometimes those last a a while - I feel trapped and angry.
The fact that her other children do not help in ANY way and show no consideration for their mother or myself (the caregiver) makes me angry as well.
We have to find an outlet for this because it is unhealthy. So, I take walks, I force myself to do this for my own benefit. It helps to clear the head and it is good for my body. Anger is a negative emotion. We need to do things for ourselves - be proactive - make time for a good book, a walk, a long shower, a phone call to a friend, a movie, a meal out with friends. We HAVE to have something to look forward to or we become just like our parent - negative. It will eat us up. Don't let that happen. MAKE yourself to what is good for you. Eat well. Take vitamins. Take care of yourself - no one else will.
Looks like there are a few of us who are unable to sleep this morning. :0) Take care all of you. Don't lose hope.
When I say that I do my caregiving from a distance, I mean that I limit as much as possible my 'alone time' with my MIL. Do what you can to accomplish this if needed.
From what I have seen the people who do the best when the caregiving years are over, are the ones who give but who keep the important things in their own lives going as well, like interests, job, other relationships, etc.
I think those who have mentioned caregiving " at a distance" also, have a good point. If you are giving care to someone who is constantly berating or criticizing, it makes good sense to let someone else come in and deal directly with them, rather than trying to do everything alone. Even it that is not the case, It couldnt hurt to let others come in to do the housework, personal care, grocery shopping etc so that we actually have a time to rest and keep some balance in our lives.
It sounds like your mom is in a good ALF and they are caring for her well. You are keeping an eye on things - which is good. You care for her as much as possible under the circumstances. You are doing what needs to be done for 'both your sakes.' ((((((hugs in return!!!)))))
Wishing you well too - this is not an easy road. ((((((hugs))))
I just make sure now that I am never alone with my MIL. That way - she doesn't say anything hurtful. She only does that when we are alone and now that we are no longer ever alone - that has stopped. Of course, it doesn't stop her from saying hurtful things 'about me' to others on the phone or when they visit, etc. I can't stop her from doing that. THAT IS WHY OUR RELATIONSHIP IS BROKEN - but she is in denial. Too bad for her.
Being executor or POA isn't all it's cracked up to be either. It just means more responsibility. Do what you can and should for your mom - see that she is well cared for - stop in and check on her 'from a distance' - she doesn't need to know you are there. Just make sure she is doing ok.
Remember, too, that it is anger at what they cannot change (old age, loss of independence, health, etc.) that makes EVERYTHING worse. Some people just don't deal with loss well. I just pray I am not like my MIL when/if I grow that old. Take care of yourself and take care of your mom in whatever way is necessary. Is there a way to visit her - but never be alone while there? You could even as one of the aids to be close by - that may help, too.
"We need to be honest with ourselves and know our limits - and even though I know that my MIL may not be thinking clearly - it doesn't change what she has done to me emotionally and physically and I knew I had to put a STOP to it. My doctor said she has 'chosen' me as her target. So, I guess you could say I am the 'chosen one.' :0)
She is still in complete and total denial - thinks that 'I am not dealing with things very well.' :0) "
I am worn to the bone emotionally from a lifetine of dealing with mother and her borderline personality disorder, and narcissism, My father and I have been her targets all along.
I agree with this statement -
I feel that NO ONE HAS THE RIGHT to abuse another person - whether old and sick or not.
And everyone has the right/responsibility to protect themself from abuse,
After the last episode of nastiness ( she told me she bever wanted to see me again - over a trivial ihcident - and then a week later wonders why I am not in contact, I am about ready to cut contact altogether, She is well looked after in an ALF, and I would never see her not well looked after, but I do not have to have social contact with her for that. She has already threatened to give someone else the job of executor if I will not contact her - fine with me, and she can give POA to someone else too for that matter. I have pretty well had it!
You should NOT risk your own health for you have your own life n you have a CHOICE. Also, if someone choose to continue care n if u can afford a respite break by searching then get it by all means for the break is well needed. Some r very expensive like $15 bucks n higher a hr. However, through researching for help through organization, I was lucky to find a place that offer respite break for 22.00 bucks for 4hrs n that is pretty good along with a hot meal provided. Plus, I was able to get on a list from the Alzheimer's Association in my local area where they have funds now that help pay for some of the respite break!
The lifeline necklace n separation is another great choice n that is if they don't need 24/7 care like my mnl whom has moderate AD. If I left the mnl alone too long, she would probable have the house burned down or lost somewhere. It does depend on someone's situation n the person they r caring for too.
Care-giving is NOT easy n you should not have to deal with it if you do not want to for everyone has their own life to live n a choice. Their another alternative n that is placing them in a NH or assisting living for their best interest n so that he/she can live their own life without killing them-self n going broke n the process.
It was great that the dr told u the facts n I wish all dr's would do that too but unfortunately that doesn't happen half the time. So, yes, hitting the pillow, screaming to get your frustration out so that you don't take it out on anyone is temporary but it is a start.
Everyone's situation is different n unique n that is why this site is a great place to come for getting different advices. That way you make your own choices for it is your life n you do have a choice n remember we r not specialist just normal everyday people, sometimes. ; )
Here goes another try. I will just say that I think eventually MOST caregivers are going to be dealing with a very ill and a very angry charge - someone who is depressed due to their losses and unable to deal with their anger and rage and so they take it out on the ONE person who is there for them - THE CAREGIVER!
I do believe it would take a SUPERMAN/WOMAN to deal with this day in and day out and not break down. It just plain wears you down to be WITH someone who is negative, depressed, belligerent, uncooperative, etc.
For me - the ONLY way I can handle this is to get away from it regularly. Sadly, these breaks didn't come soon enough. Eventually I had plenty of my own anger to deal with - a LOT of anger at the other siblings who were perfectly willing to 'sacrifice ME for their mother.'
Yes, screaming into a pillow or pounding on one helps temporarily and sure beats taking it out on a mailbox - but I can certainly understand how that can happen! Most of us can.
Sadly, for most - respite isn't a 'given.' IT COSTS MONEY - and often MORE money than one can afford - even when your sanity is at stake. But, somehow, you have to be able to get a break - the longer, the better.
The least a person should have at their disposal is a Lifeline necklace for the elderly person - and make sure you ask for the cheapest rate (we paid nearly $50 a month for 2 years before I told them I had found someone cheaper and then they miraculously said they could offer the service for $29 a month!!) So, ask for that $29 a month right off the bat and don't back down! That way, if your parent is well enough to at least push that button - you can leave the house for a few hours and know that help is just a push of a button away.
THEN schedule a long weekend and call on family and friends to step in. Tell them it is absolutely necessary and BEG - see if they will step up to the bat. (Make sure you can cancel your reservations without penalty - just in case begging doesn't work :0(
For us - the day care is just too expensive for what it is worth and a few hours doesn't help me that much. They want $100 a day - it does include meals and pick up/drop off - but that is quite a bit. They want $30 an hour for housecleaning. The same for a bath. So, I do the cleaning, she does her how bath - thankfully, she is strong enough for that and she has a nice walk in shower with heat, seat and rails and handheld shower
Thankfully, right now this minute - my MIL can bath herself. I don't HAVE to do ANY hands on caregiving. I know that could change at any time - all it will take is a health crisis - which she has regularly.
But, for now, I clean for her when she goes to the doctor or church. I make meals and my husband takes them to her. I fill her med boxes and she is able to take the meds (most of the time - she forgets a couple times a week). For now - and as long as her health holds - my caregiving is done at arms length. I have very little if any personal interaction with her - my husband deals with that.
I know this may change if her health fails or if she is hospitalized (which happens once or twice a year). But, for now, I don't have to see the dirty looks or hear the snide remarks and it has done wonders for my emotional well being.
I am also blessed with kids who will step in and help with their grandma from time to time and Church friends who do the same. We save them for a real break once or twice a year. One friend does meet my MIL at the foot doctor and escort her in/out every 12 weeks. My hubby takes her to her other more 'personal' doctor appointments. So, far - this arrangement it working.
I say DO WHATEVER NEEDS TO BE DONE to prevent yourself from having a stroke. Thankfully, my doctor finally told me WHAT I was dealing with here. That my MIL is unable to handle her anger and rage at all of her losses - and her losses are staggering - as they are for MOST elderly, sick people. She was taking everything out on me - and then denying it (she still does this).
We need to be honest with ourselves and know our limits - and even though I know that my MIL may not be thinking clearly - it doesn't change what she has done to me emotionally and physically and I knew I had to put a STOP to it. My doctor said she has 'chosen' me as her target. So, I guess you could say I am the 'chosen one.' :0)
She is still in complete and total denial - thinks that 'I am not dealing with things very well.' :0)
I feel that NO ONE HAS THE RIGHT to abuse another person - whether you are old and sick or not. I know that there are situations when an older person is not responsible for their behavior (as with dementia/ALZ) - but that is NOT the case with my MIL. She does NOT have any form of dementia. The doc says it is just plain anger!
I am just grateful that my doctor finally told me what exactly is making her this way and he also told us we need to 'remove her from our home.' That is not possible - so we have 'separated' - or at least I have. She can no longer just walk into our home and say or do as she pleases.
So, if all you can do is put a lock on your bedroom door - do that. Have a place of refuge - keep it neat and clean and pleasant. Buy flowers and keep them on your dresser or a houseplant you can care for and talk to :0). Play your favorite music. Light a nice candle (watch it though :0) Read. Do this for yourself!! Buy a box of Calgon and use it! Put yourself higher up on the list. Pray for a better day. It will come.
Need Help Anytime? 1-800-272-3900 Alzheimer's Ass.
oldcodger2, you gave great advice n yes, you both should seek if yall both can get some breaks-Respite care.
YOU BOTH can go to this site n click your state for the "Aging Care Agency" to see if they can help get both of y'all with some sort of Respite Break like I mention above to ClosetotheEdge. Here is the website.
https://www.agingcare.com/local/Area-Agency-on-Aging
StressedStpete n those taking care of someone with Alzheimer's, here is a website that offer support n 24 hotline too. Not sure is he living with y'all or r y'all living with him. You can consider about assistant living n their may be a way to get Guardianship if he was diagnosed with Alzheimer's. I'am not sure if it has to be in a certain stage. A lot of the stuff you have mention was crap I was going through with my husband's mom that I call the mnl other call it mil. I still deal with some of the stubborn stuff but not as bad so much n not sure if its because I have started to read n educate myself about this devastating disease or I am getting a bit mellow with the mnl? I think its the education to help understand n deal with some situations n I said, some. ; )
I do hope this helps all of y'all at least a little. Keep us posted on how y'all r doing n remember to don't sweat the small stuff n breath.... That we r all only human.
This is one of the other site I go to a lot n you can probable see why when u read the title. : )
https://www.agingcare.com/discussions/Grossed-Out-Need-to-Vent-Just-caught-Mom-using-my-toothbrush-to-comb-her-hair-138180.htm
I have a question though, what things for him to do can I suggest at home to try and get him out of his funk? He works puzzles but is isolating himself more and more and hence getting grumpier and more depressed.
oldcodger2, It does seem that her youngest child is a spoiled brat or just don't give a sh_!. He does sound very rude by not giving a curiosity call to let you know he is coming.What would that hurt or maybe he's afraid u might ask him to bring or do something for his mom n that is why. You know those type just don't like to do anything that is inconvenience to them once in awhile. Of course it don't suppose to matter to us everyday, yeah right! btw, dump away for it does help some. I am sorry he is such an a$$. Try to not let him bother u for it seem their is no changing in someone that can care less. You r the better-caring person. Take every break u get a chance n remember to take care of yourself.
ClosetotheEdge, You r not alone with this for their are tons of us in similar situation like yours. Please come back n talk, vent n scream if u must for it helps relieve some of the tension. It always inconvenience for those who hardly lend a helping hand. I know a lot of us are in those same shoe's.
The both of you just hop on aboard n feel your way through this helpful site. Read some others post, talk n vent. for u will see you are Not the only ones dealing with similar situations. Check out the blue areas under "Caregiver Support n Caregiver Forum." Welcome to the site n please come back n let us know how you two r doing. I hope both of y'all r able to have a brighter day today.
Yes, we will get a break soon. What I mentioned in my previous post is that I go to a lot of trouble soliciting and scheduling my kids and grandchild to visit and bring meals and I have solicited about a half dozen friends to help by calling and visiting during the day - it is a lot of work to do this - but they are willing and that way we can actually 'relax' while we are away.
Trouble is - her youngest just 'shows up' and 'screws up the schedule' without caring how inconvenient it may be to anyone else. He did this the last time we left and it sounds like he plans to do it again and it is just FRUSTRATING.
He basically IGNORS his mother 99% of the time - but if he decides to just 'drop in' he is JUST WONDERFUL - to come and see her when he is SO BUSY.
He won't answer my emails or phone calls - won't even tell us if/when he is coming - even though I have asked. He is just so absolutely RUDE. A real piece of work.
Raked leaves and got most of this out of my system. Her youngest child is just sooooo infuriating to me. Gotta let it go, gotta let it go, gotta let it go. Thanks to this forum - a dumping ground for a lot of frustrations. :0)