I wrote this at 3am when I was feeling utterly overwhelmed and in despair. I wish someone had told me the honest and harsh realities of being a primary family caregiver. Anyone else feel this way?
My editorial warning on caregiving
“It’s kind of like taking care of a child.” I've heard it. I’ve said it. I don’t have children, but I am confident I can make the bold statement that no, it is not like taking care of a child. You can choose to have a child. Family caregiving is not a choice. It is thrust upon you and ridiculously expected.
I'm positive there is joy in raising a child. I am also positive there is no joy watching your loved one slowly die without the dignity they deserve. It is heart and soul crushing, not rewarding.
Meanwhile, your life disappears. The person you have always known you were becomes in question. The where, how and why of fitting in outside the confines of the caregiving home fade away because you can rarely leave the confines. The world moves on without you. All you can do is helplessly watch.
Say good bye to a good nights sleep. Interrupted sleep becomes the norm, setting you up for mental and physical ailments you will have no time nor will to address.
The advice you get is, self care. Trust me when I say, there isn’t enough self care to properly deal with the physical, emotional and mental toll family caregivng will take on you. No walk. Nor yoga or meditation. No hobby or hot bath. Body, mind and soul are pierced, deeply.
“What your doing is so full love.” That may be, but how it really feels? Desperate. Nails on the chalk board. Suffocating. Death of your young, healthy soul. You get to the point of just wanting the person to die so they would not be suffering and you would be free, which quickly turns to feeling like a pile of selfish sh—. Say hello to low self esteem.
And I haven’t even touched on the firestorm of childhood crap it brings up to be taking care of your elderly parent. Let alone the all encompassing grief of witnessing the slow, sad demise of said parent.
Oh, and your marriage. Yeah. That will take a direct hit as well. No matter how supportive your spouse is, your marriage will not be the same. It will become a struggle to find time just you two and eventually the only thing you have to talk about is caregiving. The threat of growing apart becomes heartbreakingly real.
No matter how much guilt you feel, move through it. Do not put your life on hold. Do not live the life of an elderly person when you are not in fact elderly. Because that’s what happens. You eat dinner by 4 and go to bed by 8, with no substance to your day, just endless motions of caregiving.
Talk to your parent about options; help in the home, assisted living, etc. When mom moved here she stated she never wanted to go to assisted living. We agreed. Now we are stuck is this sad, perpetual purgatory that could last for years.
My warning to you, to everyone....if you don’t have to, don’t do it.
You can only do so much do when you get there, you'll just have to have the talk with your lived one and tell them exactly how you feel and what their options are..
If they can't afford 24 7 Care and no one else to help out, then they will have to go to a Senior home.
Prayers
Check and see if you have a local ADRC where you live; there are all. kind of helps available free of charge or reasonably priced.
Here's what I've learned in four months of 24/7 caregiving:
1) Cut yourself some slack.
2) Be completely honest with your loved one; for us this is a new phase of a healthy marriage...I know that's not true for everyone.
3) You will need a trusted friend or confidant with whom you can be brutally frank. This is of inestimable value in clarifying things that otherwise would just be stuck in your head and get in the way of healthy reponses.
4) If you're a person of faith, enlist the aid of your pastor. Or find one if you don't have one. These situations are an immense spiritual test as well as bodily and emotionally.
5) Know you are not alone. Reach out to your long time friends. - or make new ones.
6) Look for the bright spots and celebrate them when they show up...sometimes hiding in the darkest valleys.
Having had a child and many children in our family to even include several with severe special needs, caring for the elderly is not at all like caring for a child. It only gets worse with an elder no matter what we do and we feel frustrated and powerless that we can't make them healthy again. There seems to be little to no small victories anymore. The physical and mental toll it takes on the caregiver can't be measured as we have to deal with watching a slow downward spiral of our loved one, among many things. Then there are the old dynamics which get dug up from our childhoods.
We hear so often "this too shall pass", but when, exactly? 5, 10, 15, etc. years is no small amount of time and you wonder will you have any time left to enjoy your own years? Will you ever be happy again? Will you be healthy when you no longer have to be a caregiver?
In a facility it takes a village of professionals to care for an elder- whereby at home it usually is just one person who handles it all.
My heart goes out to you. Try to take care of yourself as best you can, when you can.
1 - don't feel committed to a promise you made without knowing the facts - that's not reasonable
2 - think it out .... what if you break down either physically or mentally then who will be her advocate then when you are no longer around?
3 - hire help [on her dime] & don't feel guilty about it either - if SHE needs more help than you can give, then get that help ASAP - if other family member[s] object that it will reduce her estate [AKA their part] then they either volenteer to help regularly or SHUT THEIR BLOODY MOUTHS UP - every person who questions you gets a volenteer assignment there & then
When I took my mom to long term care, I gave her no notice because she was in hospital & it was a major upgrade having her own room with her own things in it - as she had been having physio & years prior had been in rehab for a broken neck - I let her think it was short term & was for her physio -
Within 2 weeks she was gushing how great the place was, how nice everyone was, how clean everything was - quite frankly she bloomed there with 8+ activities plus religious services [she went to several a week] - she did bingo & winning a small Hallowe'en candy bar would make her day - they had a 'happy hour' with non-alcoholic wine several times a month with a 'treat' appetizer
Can you do this for your mom? - I'm guessing you can't so now is the time to make the hard call because if you do it now YOU can scope out the places & pick which will suit her & you [closer the better] - if you wait until you break then someone else will pick the first place they find
YOU ARE HER BEST ADVOCATE - IF YOU GO DOWN SO DOES SHE - I don't want to scare you but you sound at the end of your rope & time might be shorter than you realize - please take a good hard look at what would happen to her if you were removed from the picture
If you only start with care several times a week for the showering - I bet it exhausts you but they are trained to do it better & more effisiently than you will ever do - supervise the first few so that her special wants are accommodated then use that break time to re-charge your batteries [sleep/shop/hair cut?]
FYI - if she goes into a home, when you visit take something with you to show you care - my mom's favourite was 1/2 decaf coffee & 1/2 hot chocolate with some Timbits [doughnut holes] because this shows you still care - if she is diabetic always tell staff what she actually consumed
I haven't read any other posts but I'm sure we all wish the best for you & your family - the handwriting is on the wall & we have heard your cry for help even if it is not what you want to hear but rather what you NEED TO HEAR
Also, clean up your home and property and don’t expect to leave a mess for the children to deal with.
It's been 1-1/2 years (just about) since mom died and I am still recovering from this, but gainfully employed and pursuing my Master's degree...so there is life after mom.
Regret it? No way. I adore mom. She was the only thing on this crummy world I ever loved. But caregiving was very very hard and it was very very stressful...I still do not regret it.
I had to feed mom, manage her bowels (I had to induce bowel moments every tues, thursdays and sundays), change her about 6 times a day, and move her from place to place with a Hoyer lift when she lost her mobility. I had to keep her mouth and teeth clean. It was a lot of work. Skin care too. I don't think I could ever do it again though. Mom is in everlasting peace and her ordeal of living is over, which is comforting to me. She also died with perfect skin.
My dad has mobility issues &, because my parents still live in their home, he feels like he’s “done” with trying to keep up with my mom’s needs & his own when I’m not there. My mom does not have Alzheimer’s, and is still able to dress herself and do laundry. She doesn’t remember how to put together a meal and, dementia brain sends signals that she is not hungry, so she doesn’t eat a lot. She is starting to forget names for some basic objects, but is happy and walks when weather permits, colors in her books. We have tried to call in home health or hospice, but they require mom to “test” at about 49% with their criteria in order to qualify; otherwise, insurance won’t cover any of the care. Mom still scores 70%. Dad gets mad that he needs to be responsible for giving mom her pills for her heart issues, but he insists on letting mom take them on her own. Of course, she can’t. She can’t remember if she took them so, at times has doubled up. I live 20 minutes away so driving to their house-2ce/day, so almost an hour and a half/day, to make sure mom takes her pills is not an option I’m willing to do. Dad is capable, just not willing; nothing wrong with his mind.
my brother lives about 4 minutes from them and doesn’t do much of anything unless I call and tell him he needs to go help with something. My dad doesn’t call him because, his words, I hate to do that because I know he has a lot on his plate.” I do groceries, clean and take them to doctor’s appointments, and pre-prepare food they can freeze & throw into the microwave.
It is tough, to say the least. I do feel guilt at times for not doing more, but I keep trying to let some things go. Some days are better than others.
I love my support system of friends who have been through similar situations with their parents; so helpful for me.
Many
prayers for you and your family.
Second, I was glad to see comment on childhood crap. When I was taking care of my Mother she refused to shower, change her clothes, see a Dr., see her ear Dr., get in the car and go anywhere. I'm sure I'm missing something. And this is with helpers who couldn't get her do any of those things either. Everything became a control issue between her and me, the oldest daughter, whom she had bossed around endlessly to help take care of 7 younger children. It was so long between Dr. appt's that I played a trick- I called an ambulance. No emergency, just as a taxi, to an emergency room at the hospital. As soon as two strapping young men showed up she was trilled to ride in their ambulance. (At the hospital she got every test they had and I got some good info on her health. They sent it all to her Dr.'s office, so it was as good as going to the Dr. Also showing up in an ambulance, at least at that hospital, you go right in, past the waiting room. Caution, you have to pay for the ambulance.) Months later I realized that this wasn't working and I told my sibs that mother needed to go into AL. She wasn't very resistance; maybe she knew it was time. AND, the best part, she loves her new home. She's in her mid-90's now. Here's the best part, having a revolving cast of care givers that she can't distinguish one from another and has no history with, she does mostly what they want. If she won't shower they send in a different team and they get her to shower. While she showers they change out her clothes, voila clean clothes. Just having non-family caregivers makes it all work. So maybe forget that old promise and turn it into a choice- AL or NH. Anything that gets you back to a real, adult, married life and get her the competent, anonymous care she needs. Good luck.
There ought to be a book that is mandatory reading for everyone when they turn 50 on Taking Care of Your Aging Parent and What No One Tells You. Caregiving is all you name, and then there are those “little” details which makes it all worse. Like finding out not every organization recognizes a Power of Attorney, or you can’t just alert Social Security about an address change for your parent-you have to meet with them to see if you are responsible and honest enough to be a Representative Payee-which will require a checking acct designated for SS $ only, and yearly check to make sure everything is being spent the way they say (honestly, with the Elder Abuse that happens, I understand why they do it).
Then there is the subject of insurance or dealing with medical bills-if your parent can sign a form for insurance and medical providers that they can talk with you-but it may only last 2 years. And did you know that not all states have Medical POAs? Luckily, my dad had changed his mind and said he would move to my town into Assisted Living-but in Oregon, Advance Directives aren’t all encompassing Medical Powers of Attorney.
I am sure there is more that I haven’t experienced yet...There SHOULD be a a book, but I haven’t got the energy or room in my head anymore for the research and writing.
Good Luck, take care of yourself, and here’s hoping your parent sees the light.
You are also right that this is nothing at all like caring for a child. Children grow up and the work gets easier. The 24/7 aspect of caring for a new baby quickly ease. Gradually the baby's needs become less and less. The opposite is true of the elderly. Their needs become greater and greater. Even for premies (I had 2, twins) the care is much less after 4 months. Also, there is the constant reward of watching the growth of that child: a smile, the first sign of recognition of a parent's face, new abilities in evidence. Caring for a baby is a lot of work, but also continuing joy. Watching an elder deteriorate is not at all the same thing. They get worse and it can take a long time. Years. And there is little joy in watching their slowly deteriorating abilities to care for themselves.
Nobody should ever tell anyone else to care for an elder. It is too be a job to be forced on another. Nobody should ever have to do this alone, either. If there are no family resources to hire help, there should be residential care for these elders where there will be well-rested and well-trained aides to care for them.
The duty and joy of the children should be to visit these elders, listen to their stories, and share the memories of earlier years. I think there would be no joy to be found in changing Depends, wiping wrinkled old butts, or trying to wipe dribbled food off an old chin, and particularly not in listening to the complaints of an old person who is exasperated by their own growing incompetence.
Again, my sympathies with and for you. I hope you can find a way to find someone to help you. It should not fall to you, alone.
My Mother stated the same thing. I don’t think anyone should have the right to put this enormous, life-altering responsibility on a family member. There is NO amount of self-care that can get you back to a balanced state while you’re caregiving, and you don’t have the time anyway. As you so eloquently described, this completely encompasses your life and you will need to make a choice- do I prioritize my life or theirs? If my Mother was even a sliver her old self I would have a much harder time making that decision, but she is a shuffling, uncontrollable urinating/pooping, insomniac zombie at this point,
Once everyone here has their vaccines, she will need to live in a facility with a staff of caregivers, not two with full time jobs. I can’t ignore my health or my husband’s anymore and you shouldn’t feel guilt making a similar choice if you can. You took the baton as far as you could. Claim your life back before the stress claims you.
I cared for Mom for 13 years, the last 5 of which were 24x7 and increasingly intense. She was the most positive, loving person and did not deserve my occasional impatience or anger. I will never completely lose my guilt over that. Outside care was never an option financially.
By the time of her last 6 months I was of course exhausted. All I did all day, every day was the same routine of changing diapers, preparing meals, feeding, doing laundry etc.; wash, rinse repeat.
And then an amazing thing happened: a sense of peace came over me and my negative feelings faded. I felt closer to Mom than I had for a long time. I felt that it was truly a privilege to care for her in her last days.
For me the reward was being able to walk my beautiful Mom down the final path, and to the gate. She was so grateful and it gave me great solace. I believe she left this earth feeling loved and cherished.
I hope some of you have the same experience.
Let me say to those who have expressed the feeling that you have choices and should not now be limited by whatever promises you made in the past - while that may be a deciding factor, I am sure it is not the only one. There is the reality of financial concerns and in this country where elder care is not a priority, there are often no options for assisted living that offer respite. I live in the state of Washington and have looked in both my state and neighboring Idaho where my sister is a resident. In Washington state there is virtually no Medicaid available to assist in long term care unless it is in a nursing home. At $11,000 per month, my mother's small savings account would not go far. In Idaho, where Medicaid does come in to play, it is generally required by institutions in that state that the resident is required to pay two full years before they will be eligible. For the math impaired that would be $264,000. Even then, they can be booted out if the home feels they have reached their maximum financial limit (usually a small percentage) for Medicaid residents.
As for live in assistance, that was also recommended to me by my sister. Upon checking with the names they supplied, I found that even if I was willing to forego the risks of dealing with their personnel during the Covid crisis (and that is a high risk for those contracted employees), I would be paying a minimum of $700 a month for one weekly three hour visit (their minimum) four times a month. So I guess I could try to crowd everything into that three hour span, but it is highly unlikely it would be satisfactory in any way.
I don't know if people who blithely toss that out as an option are so incredibly unaware of the financial commitment or if they are simply trying to ignore the fact in home care by a family member is often the only viable solution. Generally, in this area, commitment to assisted living for one member of the family usually involves the sale of a home to pay for it.
My BIL, whom I never liked and who did all sorts of mean things to us, had a stroke in late 2017. No family, a girlfriend he continues to support but who does nothing to help with his care, and a brother (my husband)who won't force her out of BIL's house so it can be sold to help pay for NH care. BIL has lived with us for three years now and is as good as he will ever be. He will most likely out live us. Never has he said thank you for taking care of him, doesn't do anything he could do to help himself, and his care has created a whole lot of stress in our home that we don't need at out ages. He is tube fed and incontinent, although at one time he would go some times in the toilet. He can walk with a walker. We have spent numerous hours in the ER getting his tube replaced because he accidentally pulls it out.....I often wonder about that. He drools incessantly and my carpets will be thrown away if and when he ever leaves our home. Resentful, yes I am. I rue the day I agreed that he could come here. I honestly thought it would be temporary, but he doesn't qualify for Medicaid and doesn't have enough money to pay for NH care. And, he thinks he deserves to stay with us although he would never had done the same for his brother. I could go on and on but it is what it is so there is no need to complain. Just do the best you can and try hard to thank God for your ability to do the tasks you require. I pray every day that God will take him and He never answers those prayers. So, now I pray that He will get me through it because I know that one day I will be taking care of my husband and I need strength to get to that point. Thank you for giving me the opportunity to rant. I hope I validated your feelings and let you know you are not alone. I truly feel for you!!
And to HerShe89, unless it has changed in the last year, the VA has home assist at home if you are a veteran or veteran's spouse and meet the income requirements.