What Caregivers Really Want Their Friends to Know
Remember when your first friends entered parenthood and you thought they seemed so boring and self-absorbed.
And, then… you had a baby and you got it?
Well, that’s happening again. Only this time, it’s because some of us have started taking care of our aging parents. And others are wondering what happened to their fun friends.
The truth is, caring for aging parents is an experience that’s hard to relate to unless you’re going through it. None of us can easily imagine just what life is like with a parent who needs help doing the simplest things like eating, getting in and out of bed or god forbid, going to the bathroom.
And yet, this life experience is exactly what an increasing number of gen-xers and baby-boomers are facing as their parents — get older and frailer. We’re entering a time when about half of the over-age-65 population will need help doing many of life’s daily tasks. And about 15 percent of them will need that help for five or more years. This is help that’s overwhelmingly provided exclusively by family members; and most often by women.
But too many times, daughters feel all alone in their parental caregiving. Not surprisingly, their friends struggle to understand what’s happening. And daughters struggle to find the time it takes to maintain friendships. The end result is that too many women become increasingly isolated and cut off from the very emotional support they most need.
This is just unacceptable. We have to figure out how to do things differently. We NEED to keep our friendships strong. Caregivers, you need to be hyper-vigilant about the risk of isolation and disconnection with friends. And friends, you have to fight to stay empathetic and encouraging for what is our most precious resource – our friendships.
“Lots of people want to ride with you in the limo, but what you want is someone who will take the bus with you when the limo breaks down.” – Oprah Winfrey
And, so, that’s why I’m creating the official, albeit informal, code of conduct for daughterhood friendships…..to help guide our friends through the challenge of hanging in there with us. And, to keep us from pushing them away — we all have a responsibility here so let’s get to it.
Here are the essential dos and don’ts for friends of caregivers…
Don’t judge.
We need to 100% avoid the urge to judge. Judging is always good for a cheap and easy self-esteem boost but it’s poisonous to friendship. So, when your friend says she has to put her parent in a facility, avoid the urge to criticize at all costs. If possible, don’t even do it in your own head. Because unless you’ve chased down a person with Alzheimer’s wandering the halls at night, changed an adult diaper or given up your job to care for a parent, you really can’t evaluate your friend’s decision to seek more help. Can you?
Especially don’t judge feelings.
Particularly negative ones. In caregiving, they come with the territory. One of the most commented on articles that I’ve shared on Facebook is a HuffPost article by Ann Brenoff entitled, “No, Caregiving is Not Rewarding. It Sucks.” Based on comments, it seems this is a sentiment that is shared by many but that also causes a great deal of shame. The bottom line is — we may be doing amazing things for our parents BUT ALSO hating every minute of it. These are not mutually exclusive.
Duty does not require joy.
Don’t avoid the caregiving topic.
This topic is still too much of a taboo in our society. If you know someone who is caregiving, ask her about it. If it’s you, don’t hide it — by bringing it out into the open, you’ll find a surprising number of “me toos”, which are always so healing.
“Friendship is born at the moment when one person says to another, `What you too? I thought I was the only one.” – C.S. Lewis
My friend Lindsay Jurist-Rosner – in her 30s now – has been taking care of her mother since she was 9. As evidence that caregiving will produce finely honed executive skills —- Lindsay now runs a company, Wellthy, which helps families like hers find and coordinate care.
Her experience has been that everybody assumes she doesn’t want to talk about her situation because it’s so tough. But, she says, “It’s exactly the opposite. I always need and want to share…it’s just that I feel like I’m burdening friends if they don’t ask. Friends always say to me, ‘you don’t have to talk about it if you don’t want to.’ But, I need to and want to talk about it. I just don’t because I don’t want to be a downer.”
Don’t take it personally.
It’s really hard to be a good friend when you’re caring for an aging parent. Your friend may forget your birthday, cancel plans at the last minute, or go silent for months. She may forget to ask you how you’re doing, or complain nonstop about her situation. This isn’t much fun but it has nothing to do with how she feels about you.
Stay connected.
There are about 40 million people out there taking care of a loved one and yet they all feel like they’re completely alone. We’ve got a long way to go before every community has spaces designed specifically to bring older adults and their caregivers together the way schools and playgrounds bring parents together. But, sadly it won’t be that long until practically every family is in this situation — In fact, that day is coming sooner than most of us realize.
In the meantime, the lack of natural connecting points in the community make it all to easy to become isolated. Friends – you may be feeling shut out but it’s SO important to keep the connections flowing on both sides: keep texting, keep calling and dropping by, keep caring. You don’t have to commit to a long night out – just a quick hug to remind your friend that she isn’t alone.
Ask specific questions.
According to Lindsay, if your friend is caregiving, some good questions to ask are: “What’s the latest with your Mom? How has she been doing lately?” Lindsay explained to me that when friends ask the more open-ended question “How’s your mom?” it just reminds her that her mom is doing badly. Chances are that the news is not good so adding a “lately” to the question about how mom is doing allows the person to answer about what’s new or different, good or bad.
And, while you’re at it, ask your friend how SHE’S doing. She’ll get a lot of questions about her sick loved one but she’s less likely to get questions about how she’s holding up and what she needs. With these questions, you can take care of your friend while she’s taking care of her loved one.
Discourage perfectionism.
Let’s face it: for most of us, our primary emotion is guilt. That’s especially true when we’re dealing with our parents because very frail people have A LOT of needs…. And as caregivers, we have a tendency to feel like we’re supposed to meet all their needs, all the time.
Our dilemma is that the very same person whose approval we’ve been seeking our whole life is now asking for more than we can possibly give.
This is why it’s a good rule of friendship to always remind each other that we can’t do the impossible. We can’t fix the frailties of our parents’ body and mind. We can, however, be each other’s touchstone through it all.
Recognize the effects of grief.
If your friend’s parent has dementia or Alzheimer’s, she’s going to be feeling an especially complicated grief. Understand that she’s living in a twilight zone where her parent is here but not here. This isn’t the kind of grief that she’ll get over. It’s the kind that’ll soak into her skin and hang on for the long haul.
In the face of grief like this, Pauline Boss, author of Loving Someone with Dementia: How to Find Hope While Coping with Stress and Grief, says that the best response is “I’m so sorry.” That’s it.
Ok Daughters! Of course you realize that this is not all our friends’ responsibility. There are some rules of the road for us too…
Find mental space for your friends.
This caregiving experience is so all-consuming that it can take over all your headspace before you realize it.
It’s a well-known fact that people who are suffering become very self-centered. When I was going through my divorce, I was a nightmare to be around. I found that my bitterness was very toxic to other people. Even the very best of friends, the most patient of souls has her limit.
So, if you are the caregiver, be aware of this dynamic and make a conscious effort to be emotionally present for your friends.
Finding a place to connect with people who are going through the same thing can make this SO much easier and, at the same time, take some of the burden off your friends. We’ve set up Daughterhood Circles for that very purpose. Daughterhood Circles are small groups that get together regularly to hang out and help each other through this experience. Friends helping friends.
Having this outlet can help you avoid overtaxing your other friendships.
Set Boundaries.
Among the women I know, there’s an epidemic of “can’t say no.” But, if you’re going to have room for your friends, you have to be religious about setting boundaries. Saying no to a parent who wants to move in or to unreasonable requests from siblings or paid caregivers. Bowing out of community obligations that are just too much – all these things can help you keep your sanity and your energy intact for your closest friends.
Read: 5 Lessons in Setting Boundaries
Don’t forget to set boundaries with your friends also. Paradoxically, good boundaries make for good friends. If you can say no gracefully and without defensiveness, you’ll avoid feeling bitter and angry when your friends unwittingly ask the impossible.
Ask for Help.
The flip side of setting boundaries is asking for help. It’s 100% okay to do it. Your friends want to help but they don’t know how. Finding small things they can do will make them feel more connected to you, create empathy and give you a hand.
For All of Us; Caregivers and Friends…
Let’s Hold Space for Each Other.
So much of friendship depends on being present for each other. In her May 2016 article on upliftconnect.com “What it Really Means to Hold Space for Someone” Heather Plett describes this so beautifully when she says that holding space for someone, “means that we are willing to walk alongside another person in whatever journey they’re on without judging them, making them feel inadequate, trying to fix them, or trying to impact the outcome. When we hold space for other people, we open our hearts, offer unconditional support, and let go of judgement and control.”
This is the greatest gift we can give each other. So, in the famous words of the great Beyonce — “Okay ladies, now let’s get in formation.”
Fantastic post, Ann!
Although my responsibilities haven’t been all that consuming yet, I have lost touch with friends who just couldn’t understand. Fortunately, I have a lot more who do, and I appreciate those people more than ever.
Sharing.
Love the article and so much truth – I just wanted to shout out to the “sons” not just daughters. I have a friend who is going through this right now and he is the only surviving sibling – I’m caregiver to our disabled daughter and have been to an older brother and parents/grandparent. True friends are loyal and it is very difficult to get back into taking care of yourself and enjoying friendships. Thank you for the article.
You are so very fortunate to have remaining friends that understand. I have lost all friends and family while caring for my elderly Mom and Dad. The way I have been treated is unacceptable and extremely disturbing. It is so difficult to swallow that I managed to surround myself with such selfish individuals. I have always gone out of my way for each and everyone of these people. I am left to understand that there are very very very few humans that will care for another, while losing themselves. I am so extremely lonely…and not just because I’m alone, but because I am just so different than most anyone I come in contact with. I have absolutely no idea where my 50’s disappeared to and I will be forever affected by every single bit of care taking and the realization that most humans are so selfish they couldn’t here your plea for help if you were yelling from a mountain top.
Hi I do understand the same has happened to me and now in my late 50’s I am alone and celebrating the holidays sucked had friends but they drifted away though I called and wrote some. Then calls and letters, text went unanswered. But I would do it again for my parent. But today the world is full of self centered people who do not see the pain of others. That is why when someone does something good people are shocked. And it is worse now with what is happening in the world.
Wow Keely.. your post could have been written by me exactly. I also cared for both of my parents with dementia throughout my 50s and now have turned 60. In the process I have lost most relationships (both relatives and friends) in the process as I too discovered how shallow and uncaring most of these people are.
Contact me if you want to get in touch with someone who can relate to your situation.
I’m an only child, also with no kids. I have a 92 year old mom with dementia who just broke her hip. She needed to be in assisted living years ago, but I sadly supported her delusions of independence. Now I’m paying for it. She is semi-immobile, refuses to use her walker or wear her hearing aids. I’m 62 and ready to get the hell out of here. She’d be in nursing home, but they are locked down now, and that would kill her dead. So, do I die? Or does she? My great choices!
It is uncanny how your posts are always relevant to what I am going through!! Divine intervention, indeed!
I took care of my mom for 5 years. She recently passed at age 89. In the processing of the journey, I have felt guilty that I did not intermingle my friends with my life with my mom. They offered to show up but I just felt that I needed to have an area that was for the replenishment of my own soul and not shared. In the end, I felt guilty that I held back this joy from my mom — that I was selfish in not giving her everything I had.
This message is like a hug that tells me it’s ok- both the action to let my friendships nourish me and the feeling of guilt which is normal. Thank you.
I have found that most of my could care less. No one calls or asks me to do anything. But I get invited to every birthday, shower, wedding to show up and give expensive gifts. They don’t even pick up a phone for a little chat or stop over so to walk with me, maybe invite me for lunch. One friend I am so angry with right now. She told me in May we would go out for my birthday. It is July. I got her daughter a job. Not just any job … a great job. People forget and I guess they have no idea my sadness and how isolated I feel like. I am divorced and I am my mom’s primary caregiver. My sister does help. I have a caregiver when I go to work. But I need a social life too. All my friends have disappeared. And it is not because I complain because I don’t like talking about my mom’s condition much. It is what it is. I just cry when I am alone. No one should have to be ask. Just be good friends and neighbors. The neighbors know. They see me walk across the street every morning to get ready for work to my place. Most of them have lived in the neighborhood for thirty years. They are in their early 60’s. My mom is 90 years old. She was always nice to the neighbors and their children do something nice for her now. So disappointed with people.
Hi Edie, we hear from people all over the country and they all report the same experience. You’re not alone in this. It happens to everyone. Maybe try and ask for help very directly — what we’ve seen is that sadly, people don’t “get” it until it happens to them. They just don’t understand how unrelenting and invisible the whole experience is.
What you are saying is so very true! I am going on the 4th year of caregiving for my 86yr Mother & I feel very isolated, it just sneaks up on you. I look around & see there are no friends to just sit & visit with. My husband & I are Retired & moved to a strange town that Mom knows but not us. I applaud all 24/7 caregivers that can’t take the time to develop any type of friendships. It’s lonely & when your patient starts developing Dementia it’s hard to carry on a conversation with them, having to explain every word said. I love my Mom & will be here until the end, so thank you for providing a sounding board when not to many people (even siblings) want to listen!
I find so many parallels here with parenting a young toddler…very transferable for any role of caregiving. thank you!
Incredibly well written with such heartfelt understanding of the true challenges we face caring for an aging parent & the loss of our precious friendships as adult women. I find that my biggest challenges are feeling terribly isolated & missing the comraderey my professional career afforded me & the equally intelligent conversations I engaged in on a daily basis. I truly worry about not being challenged intellectually.
Very important that time is set aside to enjoy good friends as they create an ambiance of normalcy that is crutially important to keeping your head above water & remembering that the greatest caregivers are those who have at least a tiny bit of respite.
More importantly, acknowledging that before we were caregivers, we were human beings….loving, wonderful women who deserve to be loved & cared for in return. Very tough for me.
Thank you for the wonderful work you’re doing. This post motivates me to re-connect with a friend who has been caring for her mother. I also really appreciate the setting boundaries post.
I am caring for my 91, childless, completely deaf aunt, for one, because she cared for my son, Ry, from 10 weeks to kindergarten and loved us like her own children my whole life. When I brought her to my house she was using a walker and could do a little on her own, including going to the bathroom. I remember thinking, “This is a breeze.” But almost overnight it progressed to bedridden and unable to do anything on her own and the adult diapers you mentioned. 🙁 Now as I am changing a filled diaper I have to say to myself, “I’m earning jewels in my crown.” Because as you said, there is no joy in it but something you absolutely do not want to do. She lays there and tells me she’s sorry and I tell her, “Well, you changed Ry’s diapers for me so I’m changing yours.” I am so blessed that I am able to till go to work because I have a sweet cousin whose life situation allows her to sit with my aunt during the day. I don’t know what I would do without her because I could not do this 24/7. Plus it gives me somebody to talk to that absolutely knows what I am going through, like discussing how much she eats and poops. I question my decision not to put her in a nursing home every day but her finances really can’t afford it and the truth is, selfishly, I’d rather sit with her at home after work than spend that time sitting at the nursing home. When you care for someone in this stage of life you also find yourself constantly evaluating your own destiny and how to prevent yours from having to do the same for you. Even silly things like I have to lose weight in case they have to roll me too! OK, I could go on and on, but I find myself sharing things here I haven’t told another soul…….
Anne, this is excellent work! I am currently working with a client who is suffering anxiety from all the criticism & stress she received from siblings while acting as caregiver to their 93 yr. old mother!
Keep on keeping on!
My husband has Young-onset Alzheimer’s disease. Several friends, but most heartbreaking, nearly all my family have abandoned us.
My sister, someone I loved & trusted 100%, completely disconnected from me w/o any explanation. After about two years, another family member told me the reason: my life was simply too difficult for her to look at any longer. The pain this has caused me is beyond words. I truly don’t understand how people can be so cold and insensitive.
Prayers for you- and your sister. She is truly the looser. She is acting out of FEAR. God bless.
Please remember that this disease also involves caring for a spouse. If you are a caregiver of a spouse with younger onset alzheimer’s disease, “friends” run the other way!
Thank you for sharing what we are all feeling. I will share our family feels much the same but in our situation my husband is the one who has given up a career, friends and in some cases the respect of our friends and extended family To care for myFather in Law.
Collectively we have given up promotions, countless hours with our son, our home, privacy – all to ensure his father is taken care of in our home. Because we moved into my father in law ‘s house (less disruptive for him) our extended family perceives that the caregiving part is at best a part time gig because we have help. Very little is understood about the daily 24 hour care requirements and the emotional and physical toll that my husband goes through and that my 10 year old has to process everyday. Our family support is remote, involved in their own lives, but becomes super critical when not immediately apprised of dad ‘s condition, or reporting the expense required to keep dad at home. We constantly feel an almost jealous and suspicious inuendos that we are keeping secrets. Truth of the matter it’s just easier to make executive decisions as dad’s care would suffer if done by committee.
We think in our hearts it has been a privilege to care for someone we love so much and hope that it has taught our son some valuable life and love lessons. We know that it is time for full time care facility, but we also know he will not receive the same level of 1:1 care even in the best of facilities and fear for his safety. Fortunately, dad is pretty healthy – no meds except for the dementia but these days his body and mind rarely connect making the simplest tasks an arduous battle. My husband and I know that if we had not been taking care of my father in law these past 10 years he most certainly would have fallen or contracted serious illness. We find joy when he remembers us but have grown accustomed to never knowing what our day will be like…and it usually revolves around dad.
As a spouse of a primary care giver, I encourage you all to take care of yourselves. Go to yoga, have a coffe clutch with your girlfriends, enjoy your solitude – even if it is just 30 minutes. And find your unsung heroes in your care givers who can give you a much needed break. Many will never understand the magnitude of what you are living daily and will siliently judge you ( yes, they are even if they don’t mean to) ..let it go and know that everyone’s struggle is different. Remember your life and your passions and that what you are doing everyday is changing someone else’s world.
My daughter posted an article last week that is quite similar to this one…only at the other end of life. She has a 5 month old and a 3 year old, and while she has some very good young mommy friends, she lost a lifetime friend who she couldn’t keep up with because of caring for her young family.
We women really need to huddle together throughout life and realize that friendships go through good and bad times. We need to lift each other up in our thoughts and prayers when we can’t be close and cherish those times when we can be close!
This is such a great.article! I am just past the day to day caring as my mom in law is now in a home, but boy – this is what we all need to read so that we all can be better friends as we care for an elder, a young family, or as we are friends with those who are.
This article is on target, I just put my Mom in a facility she suffers from Dementia and I looked around and I was alone. I wore myself out caring for her. Unfortunately I had a very dysfunctional family who was very happy to criticize what I was doing but not to help a lot. But as I am sure many of the caregivers can relate to if you asked my family they would tell you where superheros and I some kind of villain. This unfortunately is a situation that will not get better. I am lucky I had a few friends who hung with me and supported me and a strong FB community of friends who offered support. I am now in life rebuilding mode.
This is wonderful!!!! It’s explaining all aspects of friendships & what we all can do. As a full time caregiver for my mom who has early onset Alzheimer’s disease, often I feel very alone. Even with my husband and 15 year old daughter at my side, there are days that I am overcome with such grief. You ask yourself all the time….am I going to get this disease? Is this isolation that comes with caregiving going to cause an increase risk for the disease for myself? My husband? My daughter? And dealing with the guilt of trying to be a caregiver, wife, mom, nurse, grandmother and juggling equal opportunity between them. I used to talk with some friends/family about caregiving and my mom but I got the feeling they just didn’t want to hear about it anymore. Same old, same old stuff! And let’s face it, if you have never truly lived in Alzheimer world first hand then it would be hard to understand these feelings of loneliness and deep sadness. To watch someone that took care of you and raised you only turn to around & have that person be so dependent on you for the basic needs to sustain life is unfathomable. AND to have that dear person be taught from birth, as we all are, to be independent only needing to be reminded daily & as gently as possible, that they need to take a shower (because it’s been 10 days since last one) or to eat (because it’s been awhile since last meal), etc… There is so much more to this disease than that! After all, we are dealing with people’s multifacted minds. But we do this caregiving because we love whomever is suffering. And in order to give love we must feel it & that may start with friends. Listen, it’s easier to put in text than it is to reach out but maybe, by reposting, it will help.
Thanks for the comment about the type of grief that we are experiencing as being in a kind of ‘Twilight Zone” . Siblings want so much for her to be who they need her to be and don’t realize that the ‘she’ they knew is gone. But then she drifts in and out of who she was and is. So hard to stay in the present and be there where she takes me and live in her world. The other side of that is that I am now finding myself as the new matriarch of the family. They brag to me about their grandchildren and send me the photos and ask my advice… I actually welcome it. Helps to replace what I am missing from my mom. Strange.
This article hits home for me in so many ways. My father-in-law has Alzheimer’s. I love him with all my heart; he was his son’s best man at our wedding in 2003. He would come out to the farm every day to help or just tinker on his old tractor. He told us that he was diagnosed with Alzheimer’s in 2004. He started meds for it then. Eventually, I had to monitor all his meds and give them to him.
In 2006, I started riding with him to dr. appts. I became his chauffeur after his major traffic accident. Repeatedly, we reminded him of the accident. We lied and said the state took away his license.
We paid for a call button. He pushed it at 2 a.m. I went to his house, but he’d locked the full glass interior door on the inside. I could not rouse him. Phone service was going to call ambulance until they talked to him. I called police, so they would know I was breaking in the door. Police woman came; I borrowed her big flashlight to break the glass. Nothing. After third try, she took the flashlight and whacked. Tempered glass in a million pieces. One more mess to clean up before Poppa could hurt himself. Go inside and Poppa is in bed asleep. Took away the call button.
I helped him in his own home for years. We hired caregivers to help. (He’s over six feet tall, 185 pounds with long legs. I’m 5’1″, 117 pounds with a bad back. I really did need help lifting him off the toilet.) Then he moved into our home for over two years because he could not be left alone. He was always trying to escape especially in the middle of the night. He’d dress himself, sometimes his pajamas still on under his haphazard outfits. He’d attempt to make his bed, He’d shuffle through the house to the back door. The loud thump thump of his walker would wake me up, so I could stop him. One time I was gone, my husband didn’t wake up until Poppa was in the garage, had pushed rhe automatic garage door and was halfway outside. Outside is an open field of tall brome grass. If he fell down, no one would have seen him. We got a baby monitor.
Five days a week, my husband would transport Poppa back to his house for the day. (My husband was working a night shift five days a week throughout this period of time.) Once Poppa was at his house, the paid caregiver would take over for eight hours. We were maintaining two homes now – Poppa’s and ours – the repairs, yardwork, bills, taxes, mundane daily chores. We kept up this routine for over two yesrs. Until Poppa fell and broke his hip. We had to move him into a resthome.
Even though he’s confined to a wheelchair, he was kicked out of our only hometown resthome for bad behavior. In three days time, we had to choose another resthome and move him out of one and into the new one. Sudden, big change like a move is traumatic for someone with Alzheimer’s. He regressed. He currently resides in a self-contained lock down unit within a large resthome facility 30 miles away.
It’s like my husband and I have been a tag team. Tag, he’s It now. Almost every day after work, he drives up to be with his dad. He doesn’t get home until 8 or 9 every night. He no longer wants to socialize or have fun. He never takes us motorcycle riding anymore with all of our friends. We live in the same house and are isolated from each other. He is so angry about his dad’s disease, he loses his temper about any little thing.
He does still go to his NFL home games, but he makes sure I go see his dad that day. His health is adversely effected. High blood pressure caused a stroke in his eye. BP meds didn’t help. Zoloft helped lower his BP, but has side effects that don’t help our relationship. Our relationship is rocky. Our marriage is on the back burner – not for days or weeks, but years. He is being a great son, but a lousy husband and friend.
We fight over who is going to deal with the latest problem at the rest home or his dad’s latest health issue, appts., or other needs. “Here’s Poppa’s dirty laundry for you to do because he’s allergic to their laundry soap.” Tag you’re It! No! You’re It!
We love his dad. He has been a surrogate father to me. We are barely keeping our heads above water, so our Poppa is well cared for in his last days. Poppa still knows his son. Sometimes he knows me. He still understands the meaning of our words, but when he tries to communicate, it’s usually gibberish.
He had a bout with aspiration pneumonia a month ago. First time since he’s been on pureed foods diet. When we arrived at ER, dr. wants to know if we want him to do CPR or intubate if necessary. We know his father’s wishes, but no advance directive. Our decision, decide now! NO, it’s my husband’s decision as the only child. Tag! He’s It! He looks at me and asks what I I want to do. Tag! I’m It! We made our decisions, signed forms, and Thank God, Poppa improved. No intubation or CPR was necessary this time.
Poppa recovered and is back in the lock down unit. He’s had sessions with a speech therapist to improve his swallowing. Plus he now has a special straw with a ball in it to prevent him from swallowing too much, too quickly.
Daughterhood Circle sounds wonderful. Sons need a respite, too. My husband refuses to go to a support group, so I make him attend functions where I know his best buddies will be. You are so right about the importance of friends’ asking about the parent. Once a buddy asks about his dad, he does open up to them. We are overwhelmed at times, and are our own worst enemies. Isolating ourselves; building barricades of anger, grief, frustration, and heartache where each wallows alone in misery. This is my story of caregiving. The saga continues.
Thank you for allowing me to share the last ten years of my life.
I am feeling a bit defensive for my husband Bruce. We spent the last year and a half caring for his mom. Our lives completely revolving around her care and safety. If I were not here he did it all including the bathroom and Depends stuff. He even had get her showered one day when she had a big problem and I wasn’t home. The last 3 days we had to change her together as it took two of us, and her last day it was Bruce and I and our daughter. We buried her Saturday. Now are literally wandering around trying not only to get past the sadness of her dying but how to behave now. We are like idiots with a to-do list wandering around unmotivated trying to figure out how to get started doing ANYTHING productive. Bruce did go to work today. I’m still sitting in the chair trying to get some get-up-and-go.
While “helping” my 81yr old dad take care of my 79 yr old mom with Alzheimer’s, my husband and I got full legal custody of our great granddaughter. We got her when she was just several weeks old. Being the only daughter momma calls me for so many things which I do not mind at all but feel so quilty because I can not be there like I should with raising a baby again at 54 yrs old. HB is 58 yrs old Without hubby and my brother I really don’t know how I could handle all this. And now a 10 year old granddaughter showing signs of schizophrenic my life is falling apart. I know I am a downer all the time anymore but I keep smiling and pretend everything is ok because I don’t want to burden anyone with all this. I know they get tired of hearing all my problems so I shut down and keep it to myself. It’s better that way. But I still lose friends. SO I LOSE EITHER WAY!!
It is really helpful to read all these comments. The parts about the guilt and the isolation really hit home. I also see parallels between care-giving at the beginning of life and at the end with some big differences. 1. With children, the care-giving gets easier as they age (in most ways) and the children have a life of promise ahead of them. You are excited for the landmarks in their future; they are going to go to pre-school, etc and you are happy for them. You also have some sense of the expectations on your time and how that might change over time. Not so with older adults. Often, things get worse instead of better, currently for me there is no end in sight. 2. You have a lot more control over small children. You can dress them and wash them and for the most part you are not concerned with how your decisions affect their autonomy. With an older adult who doesn’t want to get washed or change his sheets, you are constantly caught in a battle between your own need for cleanliness and order and their need to have some control over their life at a time when they have little. So you live with the smell and the soiled sheets until you can”t take it anymore or until they decide that they will get washed. 3. Support and comradery. The isolation is real; young moms talk about their toddlers all the time and find a lot of humor and support within the care-giving, They post pictures on facebook of what their kids did and said; messes that they made. Not so with an older adult. Rarely do people ask about my dad. As the sole caregiver for my 90 year old bed-bound father for 4 years, it is the isolation that is the hardest. I have about 30 cousins, and in 4 years, one person has asked one time how my father is doing. None have asked how I am doing. I have siblings that help and come to visit but you are so right that it is an experience that you won’t understand if you haven’t done it. Now he is suffering from depression and that is the hardest to “find space from” as you say. Thanks for creating this blog- it is sorely needed and so important.
My wife was diagnosed of Parkinson’s Disease at age 49. She had severe calf pain, muscle pain, tremors, slurred speech, frequent falls, loss of balance, difficulty in getting up from sitting position. She was put on Senemet for 6 months and then Siferol was introduced and replaced the Senemet. During this time span she was also diagnosed with dementia. She started having hallucinations, lost touch with reality. This year, our family doctor started her on Natural Herbal Gardens Parkinson’s Disease Herbal mixture, With the help of Natural Herbal Garden natural herbs we have been able to reverse her symptoms using herbs, which i feel has made the most difference. 1 month into the herbal treatment she improved dramatically. At the end of the full treatment course, the disease is totally under control. No case of dementia, hallucination, weakness, muscle pain or tremors. She turned 56 today. i am glad to get my wife back
Visit Natural Herbal Gardens website naturalherbalgardens . c om She is strong again and able to go about daily activities.
I am 62 years old and still working almost full time in the real estate profession. I am fortunate in that I have my office at home and have some control of my work schedule. I have a 103 year old uncle (spouse’s ) living with us. He is in hospice care for congestive heart failure. He has been living with us since February 2017. I fix all of his meals, wash his clothes, dump his bedside commode every morning, pick up medications, and am responsible for his day to day. I am exhausted. I also am the primary care giver for my mother and stepfather, both of them are 88 years old and live about 15 minutes from me. I take my mother to approximately 5+ appointments each month. My stepfather is in hospice and up until about 6 weeks ago, when he went into hospice, I averaged 12+ appointments each month. I am trying to convince my mother to place him in a nursing home as all he does is sit in a chair or lie in bed. She has Stage 4 kidney disease along with additional ailments due to aging. She is my stepfather’s caregiver with respect to giving him his meds and preparing meals (I take dinner about 3- 4 time a week). Needless to say I am overwhelmed!
How did we get to this place in our society? We have done a very poor job of preparing people to age in their homes , both financially and physically. I would like to see some financial credits given to help with modification of bathrooms, door ways and entry ways. I have stated many times that people are living too long and without assistance from family, a very tough ending to their lives. I love my mother and want her to be around for as long as possible. However, I know the toll my care giving is taking on me as well as my mother with her obligations in providing care for my stepfather .
I am open to hearing some candid conversation from others who are struggling in their respective roles. THIS IS A NATIONAL HEALTH CARE CRISIS!
There has to be a better way of managing eldercare and ailing family members. If I had a full time job in another vocation, I would have been unable to perform my job duties due to demands from my family care giving. I live in a rural community in VA and there are limited resources. I welcome any large thoughts on this subject.
Impractical.
If only aging parents were my only problem. I’m a single father taking care of three generations. The kids’ mother abandoned us. My sister is psychotic, and you can never tell when she’ll go off her medicine, and you’re dealing with the police. Then there’s the parents. One collapses and eventually dies, leaving 15 years of paperwork that I eventually took home in garbage bags, finding key documents and financial statements, piecing together their financial picture until he dies a few months later, leaving my mother with Alzheimers behind, who is lonely, in car accidents, and has come very close to falling for financial scams.
People give all of this great advice about taking care of yourself, but where is this supposed to come from when I live by going from crisis to crisis, being constantly surprised and never giving proper attention and care to any of these people?
I am supposed to work for myself, but my income has fallen by 75%. Caregiving is expensive and unpleasant. Work would be more fun. And I’m supposed to have real fun and build a social network?
I must say “WELL SAID”. I am a senior in need of help and I also was a care giver to my mother and also my mother-in-law and for a while both at the same time. So you see I’ve been on the giving and now the receiving side and fully understand your feelings. My grateful thanks to all of the caregivers out there. I must also say I look back on those days and do not regret the care I gave to my family. .God Bless you all.
This is way I hate people. NO ONE knows what a caregiver goes thru unless you have done it. I love my mother but honest to god I resent having to take care of her. My brother is useless spending most of his retirement taking cruises with his young wife while I’m running my mother to Drs appts. and seeing to all her needs. Food clothing cooking cleaning and just keeping her company. I am mentally drained and if my mother didn’t need me I would kill myself. I am so tired. Very tired mentally and physically tired
I recently had dinner with very dear good friends who always accept me and mom as a package. I live with and care for my 87 year old mother who has alzhiemers disease. Mom always likes a glass of wine with dinner. Sometimes two. At home I mix it with juice so it is less alcohol and she can have two if she wants. She is always safe. I never let her over do it. But at times I have to take away the wine or slow down the consumption and she gets agitated. My friends at dinner decided I was being mean to my mother and made jokes with my mother making me the butt of them and elevating my mother’s agitation toward me. My other friend felt she had the right to tell me that I should just not give my mother wine at dinner. I was deeply hurt by this interaction and later on angry with my friends for their lack of understanding. When I tried to talk about it with one of my friends she basically told me it was my fault and to get over it! I am still wondering how to deal with this since we all go out a lot. The challenges of sundowning etc. and having a parent who is more like a teenage toddler is so beyond their comprehension I just want to scream.
First off I would just like to say I wish there was a like button and I really appreciate everyone sharing. And I feel almost bad because the situation I’m in is obviously not as difficult as what I’m hearing from some of you others. I am taking care of my 82-year-old mom now and I do feel overwhelmed sometimes. I lived in California for 25 years and I recently came disabled but I literally did not even get my disability decision before my mom called me and asked me if I could come home and stay with her because she needed help. She has macular degeneration AFib a hole in her heart diabetes and high blood pressure. Oh and we just got done with 2 months of treatments for basal cell carcinoma that was on the end of her nose. I really miss all my friends and my life I have not made one friend since moving here to the southeast. All my time is spent on medicines doctors clothing haircuts I just I’m starting to feel overwhelmed. When I came back my siblings had told me that Mom only had a few weeks to a few months left but now we’re going on 4 years of me caring for her. Three and a half years ago my brother gave me a weekend “off”. I know he meant well and I appreciate it but when she came home her blood sugar was almost 400 and she was sick for 2 weeks afterwards which made the incontinence really bad and it wasn’t worth a day and a half off. My sister visits maybe 2 hours a month and my brother does come out more often but I’m afraid to leave her in his care. I really appreciate hearing everyone else’s stories because you do feel super guilty about thinking to yourself that this job just sucks and I just don’t know how much longer I can keep up with 8 doctors and 20 medicines and the myriad of health problems. So I just want to thank everyone for sharing. It helps somewhat to know that you’re not totally alone in this and yes our country needs to do better. Mom and I both worked all our lives but now I give three quarters of my monthly income to helping her survive and I’m living on $40 a week trying to help pay for her medicines. I know like the rest of you we just never thought our golden years would turn into this. God bless every one of you and maybe sometime in the not too distant future people will hear our situations and some type of change will happen. I guess life just isn’t fair is the saying that keeps coming to my mind. it’s not fair to our elders or to us having worked all our lives to be pushed in a corner that no one wants to hear or see.