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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"!
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) 😜
i agree with the others & “how” he wants you to take care of him. Taking care of him means managing his care. You are 1 person, you cannot solely do the job. Sure, you can. But who will take care of you? Then who will take care of him? To take care of him is to also take care of you. I would look into hiring people to care for him & care for him throughout as well.
What he wants and what is needed are two different things.
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.
Tell dad that YOU need some help. Then use his funds to pay for some folks to come in and help around the house. As he warms up to the person(s) who come in, he will probably allow them to do a little more for him with your encouragement. Dad asks you for lunch and you delegate the task to hired help.
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
Sadly the elderly do not have a concept of the drain it is on a caretaker who is their child and older themself. When your dad was a parent he was young and had strength and energy. He had a spouse to tag team the work. This is so different . Although he wants familiar and family to care for him, he needs to k ow his medical and care needs are suited for professionals and you can be a support and be there to visit but you are not a nurse.
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.
Well it's not always what he or anybody else's wants. 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.
Heartwrenching: Unfortunately your 93 year old father must truly believe that you're 'SUPERWOMAN' and capable of multiple monumental tasks without breaking a sweat. Of course, you aren't and his ideology is skewed. You simply cannot meet his request and should tell him so.
His wishes are not the best option for him or you. Explain kindly that you need extra helpers since: 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.
What a person may want is often very different than what they need. 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 am 52 years old and recently had to begin caring for my father-in-law after my fiancé died at age 62. It was sudden and unexpected. But I am doing it alone, and it IS possible. It is overwhelming, yes. It is almost unbearable at times, but I love him and I really don't want an outsider coming to our home as much as he doesn't want any outsiders, but if it ever gets to the point where I can't care for him alone any longer, I will definitely be asking for outside 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.
For both your father and your own well being try to consider options for other home health care assistance; have his PCP assess him for appropriate level of care needs. Then, begin some level of this perhaps 2-3 x / week for say about 4 hours each time( just a sample idea). Stay in the home a bit at first. Explain to your father that for his safety and your peace of mind, you want to know that should you become ill or unable to care for him, there will be others familiar with 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.
He can ask but not demand. That would make you a slave not a son or daughter. I would not ask the open ended question, what do you want? I would figure out what the options are and give him choices based on what he can afford and what I was willing to do. So many people comment in this forum that their parents did everything for them as a child so they owe them care now. Well, they didn’t just ask what their children wanted and do exactly that, did they?
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.
I am sorry to read of your situation. Many of us have been in a similar situation. Believe it or not, the best outcome will be from being brutally honest as soon as possible.
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.
Wonderful response! 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.
Your father is right. Plz bd there for him like he was for u. Just make sure u have caregivers who really care about the elderly when they come to the house. Make sure u listen to him bc u never know what ppl r saying if doing to him. Make sure u give yourself a day if to for pampering or mini vacation. Get cameras I. Ur house. U will be fine always ask God to guide , protect u and ur father
Your father is NOT 'right' OP, candyapple posts this pap all over the boards. Parents have children b/c they either want them or have sex one night & the result is a baby. We, on the other hand, are elders OURSELVES who are expected to care for elders when that job is beyond our capabilities, let's face it.
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.
what do you do when they fight you on getting someone in to help - making it hard for the aide/caregiver to help bc your parent or sibling simply resists an outsider
* You must take control and do what is needed, not necessarily what your father wants. "Of course" he won't want other caregivers - strangers - people he won't be comfortable with (in his mind). His position is understandable, from his point of view, considering fears, unknowns. * 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.
I have responded to a number of questions on this forum. I am a son who took care of his mom full-time in the family home (No involvment from siblings).
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.
God gave her a Guardian Angel, not just a son. It doesn't sound like you have regrets, so you are probably a pretty content person and that's a good thing: you're luckier than most.
Get help. Build a team. A strong team can do so much more than just one person. And, the important thing, a team will not get exhausted. If you get help with some of the smaller mundane things, you can focus on enrichment of your father's twilight years. Things like hobbies, friends, enjoyments, entertainments all will go by the wayside if you try to do this alone. And, you will wind up being burnt out eventually just trying to provide the minimum. Maybe you can add this to your sells list - getting help with some small things will help free us up to do enjoyable things together. Best wishes from an exhausted caregiver even with 30 years medical experience - it happens to the best of us!
Following up on what I just posted.. If your Dad is in complete control of the finances I would say sure I am happy to help, but I need help with that. So if you want to keep Mom home, which you and I both do, there needs to be some hired help we can trust. There's a lot out there, so we can try them out until the shoe fits! We might even enjoy having some company! Best to you and yor parents!
Sounds like you know you need help, and the need only gets greater. I would tell my Mom a friend is helping ME out. "Like when I can't be there, I want to make sure someone I trust is here". She very much liked that, especially if she liked them! She seemed to trust them much better that way. Of course when you can screen yourself first, usually works out much better, as you know your parents, and you know what you need. Soneone they can relate to as well, like a friend. Always a bonus to add enjoyment to theirs and your life. An agency is a gamble.
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.
All advice here is great, but I want to say that perhaps if your father knows that you will help with arranging everything, which is a huge job in itself, he will relax about having other caregivers or about finding an assisted living home. You want to visit, to help, but not to work full time for your parents. He's probably scared, but he will adjust with your kind strength in knowing what is best for all of you.
I watched Lady Chatterlys lover last night on Netflix and her husband expected her to be his full time caregiver till she collapsed from exhaustion and finally her sister intervened and they hired his Old Nanny - it’s very selfish on your Fathers part not to let you lead your own life and have a family . Eventually they die and we are left alone in this would - hire a caregiver thru a agency - get a VNA nurse - contact elder services - it’s a big commitment and you end up sacrificing your own life - health and Happiness . Find yourself a good social worker to help you set boundaries so you don’t get swallowed - sucked in and suffocated .
And yet Lady Chatterley found the time to regularly get down with Mellors in the woods. Always have a life outside of caregiving because when a person doesn't, they've got no life at all.
Before I go any further, please be sure you have durable POA for your father and that all his financial assets are in order, including a will &/or trust, and health care proxy. A qualified elder care attorney can help you with all of this, many have free consultations. 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!
My dad died in 2015, with cancer. I use to get off work every Friday to drive 4 hours away, to help with dad. I used all my savings to get there. I have five siblings, in which all live in different states. We have no relatives where mom & dad lives. They encouraged us to leave after graduating from high school to make a better life for ourselves. We was raised in a small town. They went to church and lead a private life. When dad got sick, I tried to find someone in there town. It was something wrong with everyone I interview. I came to the conclusion they only wanted their children. At that point we were all working in another state. It was all on my sister, who lived an hour away. I asked my parents to help me find someone to help. They just looked away. I mentioned the church I got no answer. They never said we only want our children. They wanted us to work it out. I think they wanted me to retire since I am the oldest. It was the saddest situation. Dad died and now I am looking for help in her town. I told mom we are tired. She said I took care of my mom alone. Button line I decided not to ask anymore. I have contacted agency. I can’t listen to her anymore. We have to take care of ourselves or we can’t help her. She is 88 and stubborn. Life is short. I love my mom. You are alone. I have friends alone. I can only imagine what it must be like. You need help. I felt hopeless and I still do. I enjoy my life. Being a caregiver is hard. You can lose yourself. Get some help. Dad will soon accept it. The agency came to mom’s house to assess her needs and plan to get us some help. Mom don’t talk about it because I am being persistent. Feeling guilty is apart of caregiver. Everybody can’t have their way. Take care of yourself. Try to hold on to your life. Do what you know is best? Your dad will still love you.
It might take some of the stress away if you would insist on moving her near you so that you can visit and watch over her care at the facility you choose.
There's no need to be a martyr when you can be a visiting advocate.
A dear friend gave me some very unexpected advice recently: if he still has his own teeth, take care of them! Maintain good dental care. Not only do dental problems lead to heart and overall health complications, the LOSS of teeth results in difficulty speaking and communicating, the need for processed food, difficulty drinking, potential infection, and general degradation of the jaw and entire facial structure. When my mom began to decline, she stopped brushing her teeth. It was just one more thing to hassle with her about, but I didn’t consider how much extra work there would be if it went neglected.
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.
I can offer what it looks like in late stage when totally dependent. My Dad said “I want family” 9 years ago. He had VA benefits that allowed him to age in place with my Mom. I set up everything in their house for them to be able to do that. It’s possible. I continued to work & I commuted an hour also. I hired a live in caregiver 4 days per week and my husband and I provided 24/7 care on weekends. I was 60 when it started. I am now 70. My parents are now 95 and 93. My mom had a stroke last year and my Dad is in late stage dementia now. The VA didn’t pay for everything. My parents are middle class, not wealthy by any means, but had some savings. Their home was paid for. With the VA benefit, a pension, and SS they bring in 5,000/month. At home it cost them 4200/month for their 4-day/wk live in caregiver. They’ve done that 6 years. I moved both of them to independent living near our own house last year. I moved the 24/7 caregiver with them. I am now hiring a second 24/7 person to take my place on weekends because I am at my limit. I promised myself that if it I worried it would affect my health I would stop my own caregiving. I will continue to oversee their care but just cover emergencies. Their IL facility provides a lifecare contract that allows them to move to AL or long term care when needed. I am in the process of selling their home to pay their entry fee for that. I am proud of what I’ve done and at peace with it. It was hard. It was a sacrifice for my husband and I. It’s not for everybody. I don’t judge others who make a different choice.
amazing daughter. 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 🥰.
Tell your father to wake up!! One person CANNOT do it all!! Decide what you can handle realistically and STICK TO IT!! Do not get trapped by a parent who does not understand this!!
I'm in the same boat. Here's what I've learned: *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.
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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.