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I agree with Burnt Caregiver. The longer things go on you have to bring in outside help. Oftentimes, the "solo" sibling, the others really shouldn't have a say if they are not in the trenches.
Let's face it, look around, the CNA's in NH are so underpaid it's ridiculous. There are signs on every street corner where I live for RN's, LPN's, CNA's anything to do with medical. Everyone wants to remain in their home.
My Lord who could do this kind of work for a "stranger" for $10+ change per hour. The CNA's provide backbreaking work. All of the facilities are short-staffed and overworked.
In yesterday's USA Today newspaper there was an article that disturbed me about how NH are run many without even an RN on duty. Everyone is burnt out from the Pandemic. Nurses are retiring in droves.
Unfortunately today, child-rearing and caring for parents is unfashionable. The Latino's and Asian's, at least the one's who I know care for their loved one's at home. But it is a "group" effort.
You have to have a schedule, a routine. Almost like military precision. Someone has to be in charge and make "sound" decisions. Oftentimes in life, there's not a lot of people who step forward. People don't want the inconvenience or interruption of what they need to do unless, of course, they are the one's who take sick. Pretty much in every family, the same one's show up and do all the work without a lot of fanfare. The one's who make a lot of noise and give advice usually they don't do a heck of a lot.
Whoever is providing the caregiving you have to set boundaries. You don't want to go down with the ship. Oftentimes the person with dementia they become like little kids, "are we going out today", "no, there's laundry to do, bills to pay, it's raining buckets out and I'm just plain tired". Response but we need more relish. (I kid you not--thank the good Lord I haven't lost my sense of humor).
With dementia, little concerns can appear like big thinks to them.
I may have mentioned this before but I have to share a story--a few years ago my neighbor, a caregiver to her dad was brought out on a stretcher because she was having chest pains. As the firemen, EMT's were wheeling her into the ambulance her elderly 95 year old father said, "what about my 2 o'clock barbershop appointment today?" We all laughed our head off, including the firemen.
I'll probably will be the same way when I'm older, "I have to have my roots done"!
I hope I gave you all a good laugh!
My LO decided to keep their plans for shopping & lunch rather than head directly to ER like to Dr's call advised.
I suppose your last day & meal may as well be somewhere you like than than being bored & fasting in an ER.. if freedom of choice is your priority (over risk of not being alive) 😜
A grown adult does not have to do everything that a parent "wants".
Might be time to set some boundaries, clearly explain to him that you need others to help you or he will have to go to AL where there is a trained staff to accommodate him.
Obviously, he has been getting his way for years might be time to reset the relationship.
Don't give up your life for him, in the grand scheme of life he will be gone before you, then what for you, lost years that cannot be replaced. There is no replay when it comes to your life.
Call his doctor and ask for in home therapy. Physical therapy works on the legs and occupational therapy works on upper body. They are usually separate providers so that would get new people coming into the home to work with him. Medicare covers it for limited times, so ask for one of them to start first and when time limit up, ask for the next type of therapy to start. It is quite good to have other people interacting with him and works on his strength as well
You're right. The elderly often don't know what a drain and burden they are on their adult children who are older themselves.
This is why those adult children who take up the responsibility of caregiving have to learn certain things. Like not tolerating one second of stubbornness or verbal abuse. The caregiver has to know how to shut that down quick if they want to be successful. Like going ahead and bringing in hired help whether their LO wants it or not. Then the most important one of all.
Establishing and maintaining those boundaries. The elder unable to care for themselves anymore cannot be allowed to call the shots and make all the decisions like they're still in charge. They're not. This part of their life has to stop when care has to begin. They have to learn to accept it and their adult children (even the ones not doing any care) have to accept it too. If it's a shared sibling responsibility they all have to support each other. If it's a one-sibling-does-it-all the one who aren't doing any of it need to support the one that is. It can be hard for a family to stop being obedient to their parents, but you have to be to give that person what they need. That can mean bringing in unwanted strangers (homecare aides) into the house. It can also mean placement in managed care too.
I am 64 and my entire life I have always put other people's welfare first.
I am alone now and regretting all those years I gave to others.
I have never realised my own dreams, so I would advise you insist on outside help in order to manage.
Dont take no for an answer...think of yourself now...you will end up resenting him.
People are very selfish and if they can find a soft hearted person to rescue them, they will sometimes take advantage of that.
Be tough.
You are still here. Your mind is still in tact. 64 isn't elderly. You're telling someone else to think of themselves now. Why don't you do the same.
You can still realize and have some of the dreams you once had. Why can't you?
Don't let regret own you because that monster will only use up the rest of your life. Don't let it have any more of your time.
you get tired and need rest,
you might get sick or injured and need others who already know his care,
he needs the benefits of rotation of "friendly faces,"
he can develop friendships with others who have similar interests with him...
You need to have enough help (family, friends, members of faith community, paid help) so that you can meet your daily needs (hygiene, sleep, food...) and time off weekly to meet your social needs (friends, family, hobbies/interests...). Social needs are as real as the need for sleep - it keeps you from experiencing burn out.
Your father NEEDS care. He only WANTS you to be the one doing it.
He has to be made to understand that it doesn't work that way. Caregiving can only be successful if it's done on the caregiver's terms. Since you are unwilling to become a care slave to your father's needs and demands (and rightly so) there will have to be hired caregiving help coming in.
Go ahead and make the arrangements for as much homecare as you can get and afford. If your father will not work with hired help, he gets placed.
I think he'll work with hired help.
I go to school four days a week, for 4 hours a day and that doesn't include the 45-minute commute time (22 minutes each way.) I also run my own business from home. So it is very challenging to find the time to tend to his needs. He sundowns a few days a week and shadows me constantly.
If he sees me relaxing on the couch, he leaves me alone, but the minute he sees me on the computer trying to accomplish a task, he interrupts me every 15 minutes and it's exasperating. But I cope with it, somehow.
He will not accept that he has dementia and doesn't even know he has it. I have tried telling him, but he just says, "no, I'm just getting old."
He thinks his wife died many years ago when it was just six months ago. He asks the same question over and over again and recently, he started calling me his "wife." He's very confused. It's sad and it is challenging, but I'm dealing with it. But I have lots of outside support from a counselor and group I attend for grief recovery. Maybe you can get some outside support from a therapist or counselor and there are also groups that help caregivers by offering emotional support. If you can't find one, maybe start one?
These are my thoughts, challenges and solutions for my life, I hope you can find some for yours.
Best,
Heather
You have taken on the *care* but do you have the *authority* you need?
Unless your are this man's next of kin & POA you need to reassess. You may be being used.
him and his needs. Since you identify no other relatives, contacting an elder care attorney for guidance on future planning would be a good consideration for you both.
Who will make decisions for your father and you needs your attention for both of your well brings.
If your father is a veteran, the VA Services may be able to greatly assist you.
Of course he " only wants you"; but realistically, it is best practice and responsible to have other help and care arrangements in place. Even to go so far as potentially looking into some form of placement/ retirement living arrangements that would meet both your needs and, allow you to have some independent life as well as assurance that he will be cared for in the event that you could not.
I think children should love their parents and help them as much as they can. But 24/7 care for an elder by one person just does not seem sustainable to me, especially if the caregiver is retirement age or working.
My mother stayed in her home until she passed at 96. She would have said she was living "independently." What she meant was that she wasn't paying anyone to do anything to help her. In fact, there were 4 of us daughters helping her as our time and situation allowed. One was at her home every day for a few hours and took care of her mail, straightened up a bit, helped her with her hair, bought her groceries. One went to her house 3 or 4 times each week to do cleaning, take her to doctor's appointments, and miscellaneous tasks. I took her out two times a week for a drive or lunch and picked up her prescriptions and other errands. The 4th, who lived too far away to be there on a weekly basis, took care of her finances and talked to her every day by phone.
By the time she died we were all exhausted. We each have sworn many times that we will never do this to our own children. We all have wished that we had more strongly urged her to move into assisted living.
Compared to the experience of some, we had it easy. Mom was pretty reasonable in most of her demands, if stubborn on others. She maintained a pretty good attitude and often said thank you. (Not nearly always.) Three of the four of us had supporting spouses who helped us. Nevertheless, it was nearly unbearable at times. I simply cannot imagine even trying to do this alone. It may be possible, but only at the cost of your sanity and health. Do yourself a huge favor and think about what you really can and want to do. Be a bit pessimistic about how much and how often and what kinds of things you might be able to do.
Then tell him. That needs to be a one way discussion. Do not compromise. Bear in mind that his situation is guaranteed to get worse, not better. What he wants is a wish, like I would really like the body and energy that I had at 50. My wish doesn't make it happen. His wish can't make you capable of fulfilling his wish. Do what you can but do not allow yourself to be guilt-tripped into more than what you are really can do and still feel kindly toward your father. Otherwise you will end up feeling resentful and full of regrets. Good luck. This will be difficult, but I promise that once the initial disappointments and frustrations are over it will get easier.
I, too, am caring for my mom without spouse, children or sibling support. It is not doable, in my opinion. I am broken and it is not fair to my mom bc she has no one but me—an overwhelmed lonely angry caretaker. And what if I were to get sick? I applaud your response and hope writer can find suitable placement for her FIL. That’s what I’m working on for my mom. And yes, it only ever gets worse.
I want to WIN THE LOTTERY but that's not going to happen either, so I better root myself in reality rather than rely on pipe dreams to get by! Your father is living in fantasy-land expecting you to do 100% for him. God can't change dad's briefs or wipe his behind, unfortunately. Praying is fine, but it will NOT help you with the day-to-day anguish you are faced with. Assisted Living or full time CAREGIVERS coming into the home on DAD'S DIME will relive you of this nightmare, OP.
* Are you his POA ? If you are, you make these kinds of decisions.
* Whether he has dementia or not, you do your best to explain the / his care needs for his welfare/best care and do that once (the explaining). Often talking logic doesn't compute and is a waste of your energy. Depending on his cognitive abilities / understanding, do the best you can in any given moment - and then make the plans to get help / caregivers scheduled.
- It may or may not help to ease someone in, saying they are a family (or specifically) your friend - if you think this will make any difference in his comfort level.
IMPORTANT:
- DO talk to care providers first and let them know how to talk to your dad (his hobbies, interests, concerns) so they can relate / connect with him - and he feel this connection "they care".
IT IS IMPERATIVE that you realize that no matter how torn you are between doing what he needs (more / other care / providers) and what he says and how emotional he may get - pulling your heartstrings - is realizing that without you available, he will either get caregivers - on an emergency basis put in place, with no easing in, and you will be too exhausted and unable to meet his care needs.
- Doing what is needed and the right action doesn't mean it is an easy decision for you. It is emotionally difficult to make these decisions as health care needs change, demanding more of your time and energy. It is hard. Acknowledge yourself for doing what you know you need to do - for him and yourself.
- YOU MUST take care of yourself first to be available to him.
Gena / Touch Matters
I made the decision to take on the caregiver role after observing mom's care while in rehab for hip surgery. I would visit the facility at least twice a day (our home is just down the street) to see if her "care plan" was being followed. One day, I arrived late morning to find her not at physical therapy, but in bed with the blinds closed. When I asked staff why, the reply was "Well, your mom said she was tired, so we decided to let her sleep". She also developed a pressure ulcer. That did it. I went to the staff social worker and said mom was there to receive rehab so she could go home, not lay in bed so staff did not have to deal with her. I ended up participating in the physical therapy sessions from then on so I could be prepared for what I needed to do when she came home.
What made my situation different than some on this forum was that mom was pretty cooperative from day one. Did we have disagreements, of course. But right up until she passed in January at age 93, she seldom complained about how I was taking care of her.
I was her healthcare proxy, POA, and Executor. We followed a daily schedule, a NECESSITY which made life much easier to manage. I received monthly calls from the Office of the Aging caregiver advocate who asked not only how mom was doing, but how I was doing. I communicated very well with her primary care doctor. I had the assistance of meals on wheels delivery, which gave me an option as I prepared her three meals a day. I made sure when I left home to conduct errands it would be no more than an hour, and that mom had her cell phone handy (She also had the emergency necklace). I did have an aide come in once a week just so mom (and I) could have another person to chat with.
I was acutely aware that the day might come where her health could deteriorate to the point where I would have to consider placement in a facility. It was on my mind everyday.
As I look back almost a year after her death, I still can't believe I did what I did, but I'm so glad I did it. Each one of us on this forum have a different story to tell. But we are all tied together as a community of concerned individuals who just want the best for those they care about.
I would have "the friend" shadow you a day or so. Have them interact with your parents while you are there (caregivers can get into the habit of interacting only with you, and not the client). Say things like, "Do you mind helping me with some cooking?" Etc so your parents get the impression this is truly a friend helping out, and not hired help.
This is of course with the understanding that you are paying the bills. If they are paying them, they may not want to pay for care. In that case you may say your good friend gets paid to help people when they need it and "I won't be here such and such times. I would feel better having someone here for you. She gets paid to do this as she is good at it but she is also a friend. I don't feel comfortable with just anyone". This addresses a lot of their fears. If it turns out they don't like the "friend" at first but you do, you can says things like "Yeah that was a bit awkward. I do appreciate she wants to help me though,as I could use it. Maybe we can give her a chance." And if you yourself don't think it'll work you can just not have "the friend" over anymore.
Good luck and God bless!!!
Always have a life outside of caregiving because when a person doesn't, they've got no life at all.
What human being on this earth wouldn't rather have family than a paid professional take care of them? However, the toll it takes on one person is enormous, and you will be better off to hire part time care who is a good fit for BOTH of you. Dad will adjust. It's not like there aren't huge rewards for caring for your parent - the issue is you won't be able to see them or feel them as your dad's needs increase. So do it with love - but do with help. If you're looking for ways to address specific care needs, let us know. This website has members who have dealt with every conceivable need. We care!
There's no need to be a martyr when you can be a visiting advocate.
The caregiver bears the brunt of the relationship, so be sure to take time out for YOU. You cannot do it alone, even if it’s just to get someone in once a week so you can get away from the situation awhile. If he is still good mentally, remind him that if you get sick, he will have no options. God bless.
and excellent promise of self-preservation:
“I promised myself that if I worried it would affect my health I would stop my own caregiving.”
——
i’m also very proud of what i’ve done and am at peace with it. now i’m working towards my freedom. like you ClairJ, that doesn’t mean i completely stop helping.
meanwhile, here i am helping my elderly LOs with a few more things, and feeding them daily jokes with their breakfast, so they start each day laughing 🥰.
*Get rid of any tripping hazards (ei rugs, mats, floor decor, etc).
*Install hand rails and anti slip mats in the bathroom.
*Have food like fruits and veggies pre cut, so to avoid injury.
*Get their eyes tested, lots of falls happen because of poor vision.
*Do more skype or video calls for appointments that don't require them to be there in person.
*Print out a list of prescriptions they take (including dosage amounts and dosage instructions), make copies (put one in the car, one in the house, and one in your wallet or purse).
*If the have a DNR (Do not Resistate) make sure it's legal and notarized. Take copies to their primary care physician/local hospital. Leave a copy in the car.
*If you have any family traditions, do them if you can. It lifts their spirits.
*If they have hobbies, join them.
*Give them love and encouragement.
***Know this! You are doing the best you can. Breathe, do self care, forgive yourself for the things you can't do, and know there will be more to be learned. And of course, you are NOT alone! Hope that helps, these things have helped me. Take Care ❤
PS if it gets to be too much, ask for help! No shame in that! Sometimes it's what's best for everyone.