If the solutions were practical, I wouldn't have this problem, and I bet this goes for most people reading this.
- You've taken on too much.
* Well, I feel like too much has been dumped on me, and there is no one else to take care of it.
- If you don't take a break, the resentment is bound to turn into caregiver burnout, which may lead to depression and health issues of your own.
* Once again, who else is there? My wife abandoned me with our two kids after our daughter died and cut them off. While I was trying to manage them, my youngest sister became psychotic. I have one sane sister, and she and I worked endlessly to get her into treatment, which lasted a year. While she was in treatment, my father was diagnosed with cancer and eventually died, leaving me with 50 years of paperwork that I brought home in garbage bags and boxes and sorted through for almost two years, finding everything from 45 credit cards, many still active to gold coins to active and inactive brokerage and bank accounts. It took me two years to make sense of it, while my sister and I coped with our mother, who has dementia and our psychotic sister. I wound up setting up a Medicaid trust for the house, finding a long-term care policy, setting up a special needs trust for my mentally ill sister (who, now medicated, is rude and snotty and angry and has borderline personality disorder - she's a gem), getting a proper power of attorney, will and healthcare proxy set up for my mother, and sending my brother 20 years of tax records that I found that my father had done for him - he hasn't worked since getting released from prison in a far-off land 10 years ago (and of course, I did numerous favors for him while he was in prison, including working with the embassy to get him into his own cell, because 6 members of that country's mafia was picking on him when he was in a 7-man cell). He's also more trouble than he's worth. That was 3 generations at once to care for.
Somehow, my health is amazingly good at 61. However, I feel like I'm being punished for being healthy, because so few of in the family are. It would be nice to take some time off and ride a bike for a week or have a vacation. Some years in the past 6 years I've had as long as a week, and twice I've had as many as 7 days of vacation, plus 2 weekends.
- It seems like there is no end in sight.
* My mother is healthy physically, and still plays golf and tennis. Two doctors have told me to plan on 10 years. I don't see the resources lasting 10 years, so I'll have to invade the Medicaid trust, unless she gets Covid, which I really don't want her to do. We're doing whatever we can to keep her in her home right now, because assisted living places are lonely and miserable during Covid, and have high infection rates. I'm also supposed to be the trustee for a special needs trust for my mentally ill sister, who is younger than me. I see no end in sight - constantly picking up one generation or another who has fallen apart or who refuses to be compliant (if my sister goes off her medication again, she might wind up in jail - she almost did the last time). To me, she is not a loved one but a loathed one.
I've been told that it's great that I had the ability to set up trusts, to decipher my father's financials, figure out how to work with attorneys and accountants to set up my mother and to be able to clean up my father's mess, because many people are unable to do that. Once again, I feel like I've been punished for having abilities. If there is any inheritance, I get the same as my jailbird, angry brother, who contributes nothing and probably can't, and sane sister, and my mentally ill sister gets more.
- Everybody constantly wants a piece of me, and there's nothing left for myself.
* Yup. Fun is gone from my life. I'm an indentured servant, miserable and going broke because this weirdo family has also gotten in the way of me making a living.
I can relate to most of these feelings except for taking an overdose of pills. That never entered my mind, thank God. I cared for my husband who died in March and now I am grieving the loss. I know I did everything in my power to make him comfortable, so why do I feel so bad?
#11. I wish my SO's adult children would fall off a cliff. Where is their concern for their 85 year-old father? Why don't they visit him in his home? Why don't they realize that I provide a supportive, loving environment for their father? Why are they incapable of examining their own motives in their legal efforts to gain control of his financial affairs. Why don't they realize that their father would be paying for care if he were in a care facility? Why do they purport to provide better care by yanking him out of his home and adopted city, where he has lived for over 40 years? Why does money and assets always seem to be the root of adult children's issues. Why don't they grasp that yanking their father from the East Coast to live with them might actually shorten his life? Why can't these so-called adults be honest about their true motives?
well i could certainly relate to all of these!! my mother passed, got her thru all stages of dementia. it was really hard, but i loved her so much that i would not have changed that. now, still caring for my father...93yrs old, gets on my nerves with his demands and complaints...and I after all this...i came down with gastro intestinal problems from all the stress. i think what threw me over the top is the fact that i have to take care of everything in this four bedroom house and the studio apt behind it. i mean everything...cooking, cleaning, painting, calling handymen and contractors when job is too big...everything. i have a brother that lives here...he's a filthy hoarder that does nothing!!! he loves to fight about anything because he is so miserable. i think im more tired of cleaning everything when i have this slug in the house...that has never cleaned or paid a penny for anything his whole life...expect the phone bill!! i now wonder....how long i can hang in here...but have decided to get on antidepressants. oh well....maybe those will help. life
Why would anyone worry about what is "normal" and what is not? Why worry so much? What if something isn't "normal"? Is it a crime? And who determines what is "normal" and what is not? Certainly not someone from the outside, who lacks insight into the family's history and its cultural background, has not competence to do this. I don't care how many degrees they have on the wall. Their degrees alone should not give them the authority to determine another person's sanity nor insanity. It breaks my heart when I see people deferring to medical opinion time and time again to determine whether or not they are "normal." You are just fine. If you have to cry, go ahead.
I need to take issue with #10. One and a half years ago a doctor recommended placing my mother on hospice. While I was of course upset, I was also relieved. I thought I can do this for 6 more months. I saw the light at the end of the tunnel and changed my behavior accordingly. I shortened vacations, gave into her demands, etc. I grieved.
But after 8 months there was no change in her health and she no longer qualified for Hospice. We had to adjust to life without the extra aides. Which was very stressful. I've been giving into her and can't get my life back.
I have been taking care of my mother in one form or another for 11 years, pretty intensely for 6. She is currently in a nursing home. She is completely bedridden, refuses to get out of bed and must use the Hoyer lift when she does for her weekly shower.
I'm sure the doctor thought he was doing the right thing, but he didn't have a crystal ball and he didn't do me any favors putting her on Hospice. I often here that people wait too late to put people on Hospice, but there are problems with putting people on too early too.
I have all these thoughts...except the sleeping pill one. Running away, escape is the most prevalent one. My mother has refused all inside help, will not consider hospice or another means of living....we all live in same house-- mom, hubby and me--. The relationship with mom has gotten so toxic I can't be in same room. We no longer talk to each other. She will not stop doing things that hurt her...physical things causing pain and injury. Right now, I've been told by her doc to "leave her alone"...tough to do in same house. I am disabled with a pain syndrome. I have no escape or respite options. My doc knows the situation and I have a counselor. We've all talked this to death. It feels like I'm on a death watch.
One of the worst parts of caring for my mother all these years has scared me because when I first started out, I didn't think of the fleating years going by. Now, I find myself a huge bundle of emotions while I realize that I gave up the best years of my life's (my youth and opportunities I can never get back). This is when you see those in your family that didn't/wouldn't help make you feel insignificant and left out. Because of the sacrifice of caregiving you pay dearly. Then, we're the one left behind feeling we could have or should have done more... We are the ones carrying the pain of all we have been through sometimes even coming out feeling guilty. Just doesn't feel fair.
cmagnum Thank you for your kind words. I only meant that I feel like I have no life sometimes being a caregiver. I'm not depressed etc. just stressed and exhausted but I am thankful that my parents are still here even though Mom can't communicate very well anymore. Given their ages it's always on my mind that at any time I'm going to get a call that one of them has passed or is being taken to the Hospital. Or every time I hear a siren it's one of my parent.
Hardly anyone wants their parents to die and when various diseases hit them, we do miss being able to talk with them. I would imagine that your parents missed having their parents around when they died. However, they continued on with life.I don't think they would want you to just stop going on with life in the future although I know one person who became depressed and basically paralyzed for a long time after their parents died.
Your post sounds like you are deep into anticipatory grief and given their ages who knows how soon that may become a reality. Yet, loosing them does not mean you are loosing your own life for you still are alive and have your life with your husband.
Being in this possition with my elderly parents 90 and 93 years old, I can relate to the feeling of losing my life and being exhausted but I don't want my parents to die! That is unrealistic I know, but I would do anything to make them happier. Mom has dementia and has declind rapidly. Today she thought it was Christmas and we were planning dinner. Then it was my Birthday. It's my Dads Birthday tommorow and I am hoping for some happiness for them. I just wish Mom had been able to be Mom longer. Dad decided to keep her at home and he would take care of her with my help that has worked pretty well but Dad is getting somewhat forgetful at 93 and I really don't have any help other than my husband who still works full time and will do anything I ask even if he has to leave work to do it. For me the worst part is not having my Mom to talk to.
Medicare never has paid for a nursing home. It only pays, for about 100 days, after someone has been in the hospital and is then sent to a nursing home for rehab and their progress is reported to medicare.
If someone has private pay or has long term care insurance, then there are various therapies that medicare will pay for but the person must make progress or medicare with stop paying.
Medicaid will pay for a nursing home for those with a demonstrable need.
Are you aware that Medicare will no longer pay for a nursing home unless the patient is sent there from a hospital? Unless you have piles of money, better think twice before sending a parent to a nursing home.
1,3,5,6,7,8 are all of my guilty thoughts lately. It's just so overwhelming sometimes! I confess that I have had thought number 10 once or twice in the back of my mind and I felt like I was mentally murdering my own grandparents all because I just needed a break. It's an ugly thought that leaves you feeling completely disgusted with yourself.
And I need advice on caring for my mother and caring for myself MRI’s and how my mother conducts her daily activities suggest that she has some form of early onset dementia. She is 60. I am about half her age and never saw this coming. I am trying to process the plethora of emotions I have experienced in the past two weeks ,when she did her latest MRI, although this is something that has been hovering since 2007.
I am seeking advice on how to support my mother and how to have a life while I do so. I am so afraid of getting wrapped up in her care and realizing I have spent a decade as caregiver and given up experiencing life.
Some of the things I feel ANGER that my mother is experiencing this at such a young age. She has had a hard life and this has struck right when she retired and she should be enjoying life; I also feel anger at my relatives who have taken 7 years to realize that she has a problem, as I have been saying, but now are armed with criticism about me not focusing on my mother. I try to get away occasionally with my partner, spend a few nights or a weekend, as I always feel drained after a day with her and this is looked down upon. FEAR. I read this forum and my heart stops as I see where this disease can progress to… my mother eating napkins and not knowing me. I can’t breathe when I think of it. I also fear this ruining me financially. My mother has a pension but it is no much, and she already needs so much medical tests and medication. Most of all, I am afraid of stalling my life to care for her. I genuinely have no desire to do this, as I see it as pointless. I want to be active in a care regime for her, but I cannot be her primary care giver. GUILT. I spend so much time wishing this disease could just go away and wishing I was not “stuck” taking care of her but could be traveling, calling her with my problems and for advice… I WANT TO BE THE CHILD! Then I feel badly because I know she did not choose this. RESENTMENT. I struggle with a latent resentment because although I know this is not my mother’s fault, I feel as if she has always been clingy and now she is an extreme version of this. She separated from my father when I was a child and I feel as if I have been a surrogate spouse and a friend all these years. I moved away from home, as I was determined to be free and enjoy my life, but she heaped much guilt on me for doing so, in a way I grew to see was not normal. How do you tell your teenage child who is seeking to learn and grow “you abandoned me!” She is a loving woman, but I feel like she could have done more to have friends and maybe find love again and encourage me to go out and experience life, instead of be her constant companion. I also resent that I feel like I have the burden of an adult child. I have not had any children, but I feel like I am already a mother and wonder what energy will I have left for childbearing. Lately, my mother calls me about every ten minutes to do some task or answer a question… as much as I love her, I find it burdensome. FATIGUE. Some days I want to run away. I have a sibling, but they have not reached out to help take care of my mother. They have not had the best relationship because my sibling was rebellious and my mother, OCD, took this very seriously and personally to the point where it made her deeply sad and established a wedge between them. Also, it is hard because in the past my sibling has not shown themselves to be trustworthy, with things like money. So I shudder at the thought of them handling my mother’s money or worse, me having to enter into any financial agreements with them to pay for things for my mother. I find myself hoping my sibling never had to be a part of this caring picture, as navigating around them with issues that require trust is just an added burden. SADNESS. When my mother looks at me to ask me a question when she is confused, I die inside. I go to the doctor with her and we sit in the hall waiting and she asks Why am I here? I hold it together, but I feel so sad. GRATITUDE. When my mother asks me a question I just told her answer to, especially in public, I feel grateful that I can be there for her. I sometimes want to open her head and look at her brain and make it work. I wonder what has made her confused… and I am grateful that I can add clarity, if only for a moment. Sometimes we go somewhere to do errands and I can tell she has forgotten why she is there but once she sees me she relaxes and I am grateful that she still knows me and that my presence brings her comfort. APATHY. Some days I have hope that we will find that she does not have dementia. But some days I think honestly about her decline over recent years and just accept it and plan. I plan for how I can get in home help, which seems so unaffordable now, and have a life and think about what I will do when she no longer knows my name. I want to hope, for her sake, but I don’t. Instead I just await a trrble end.
Sometimes I fantasize about getting away to the coast for 3 nights and 2 days ALONE. Just to sleep, read, walk on the beach. But, of course, that would mean my husband with Alzheimer's would be gone and how could I bear that? I think it's just a natural desire to have some relief.
oh Geezz I have all the above secrets. just about.... I try to block them all out but some days it just consumes me. I don't care about cleaning the frig or organizing papers. Id rather just watch the food network while mom sleeps all afternoon but then I feel guilty cause nothing is getting done,,,,, it that ok ?
Brilliant article. I am an Aussie.... and this whole website is brilliant. So much information, Useful tips, UNDERSTANDING... wow. Congratulations on creating such a great website.
When you first start out as a caregiver (with all good intentions, energy, youth...) you never can see/imagine what the 'future' holds as far as what it will do to you. After an accumulation of time slowly creeps into years, you one day realize that you're not as 'strong' as you thought you were. It changes you in ways you never thought possible. In many cases you find that there are very few people that will help you and, in retrospect, become nonexistent. On top of all the caregiving stressors, you become a changed person because you're still in denial that your siblings, friends, etc only care about themselves. Never in my wildest dreams did I ever think humanity as a society could be so uncaring. I guess this is what typically happens to the 'nice' people like us that become caregivers, who feel they never give enough. ironic, isn't it?
This was a very timely article for me, as my husband who has Alzheimer's, is in a real snit over fancied slights. He feels neglected and unappreciated, although I've tried to always be there for him. This article puts it all into perspective for me. Thank you!
We lost our Mother last month and I how I would give everything for just some more of the occasional negative thoughts and seemingly endless service. Caregivers should never lose sight of the honor and blessings of the challenge.
I'm caring for both my patents now. My father is 76 and has non-Hodgkins lymphoma and my mother, who is 74 and has CREST syndrome, a form of scleroderma. I gave up my home and moved into their home with my two youngest children who both have Asperger's syndrome. My oldest daughter and son-in-law moved in my home so my daughter is available to help me some, although she has two small children and works. Dad's treatment is not going well and he is very weak and struggles to maintain his weight and falls occasionally. Mom is the bigger problem. She's been dealing with depression, refuses to see anyone for it, and once my father was diagnosed she began drinking HEAVILY. So heavily that she was over medicating herself, not eating, and becoming incontinent. She eventually wound up in the ER and her alcohol abuse was discovered. She was discharged after 4 days but started sneaking her wine again within a week, while I was dealing with my father's recurrence of his cancer. Luckily I got her admitted to the same hospital my father was in so I could run from unit to unit. Eventually mom was admitted for a 72 hr hold at the psychiatric hospital while my father was transferred to Stanford for surgery. It was difficult to hear my mother admit she was drinking and over medicating herself to get attention. I was exhausted, spending no time with my children, worried sick over my father's upcoming surgery and my mother is doing this for ATTENTION?? My sister (my only sibling) died from alcoholism and she was forcing us to watch it again...but also telling my kids she wanted to die, asking them to help her die, asking me to shoot her. Talk about feeling resentful. I'm running around trying to save her life and she doesn't want to live! There are days when I wonder how long I will have to care for her when she still asks me to just "put her out of her misery". I'm exhausted 24/7, worn out, sick...why am I doing all this for someone who doesn't even care about living? My father is desperate to live. He appreciates what I do. Sometimes I just want to tell my mom I'M DONE. It's Dad's turn and he gets 100% of my energy because he WANTS to live. But I can't and could never do it. Its so hard caring for someone who doesn't care for themself. Mom had even stopped bathing on a regular basis. My 11 yr old son wants to know why Nana smells. What do I tell him?
The sad thing is that not all Caregivers are able to maintain healthy senses of humour. A GSOH goes a long way to providing a safety valve for feelings that are non-angelic towards the person to whom you are providing care.
One of the cold, hard facts of life is that elderly people can become cranky, noisy, and demanding. Closely allied to that fact is another fact, namely that some caregivers will allow that behaviour to get under their skins and make them hostile or ungenerous to wards the objects of their care. That way lies tragedy.
It is essential that hurtful comments from the cared for are not allowed to poke through the skin of the caregiver. That's rule one. A hard rule, but once it is mastered, then life gets easier for both parties, and for any others that may be involved.
Remember, when Mum or Dad says you are tryiong to pouison themm, steal their money, make them pay for your vacation, etc, it is not the parent you once knew talking to the child they once knew. The circumstances have changed and their fears may have become real to them. I will give an example or two.
My mother died at almost 93. I was the only one of her children that she did not rant and rave at. My sister says it is because I was always her blue-eyed boy. That is NOT the way I remember our relationship. However, that's rain off a duck's back to me. A flea bit to an elephant.
Mother would insist that she had been 'out on business, 'upstairs with the children,' or that her husband' would be home soon and she was getting dinner ready for him."
My sister and brother would argue with her telling her that she was wrong. Their reasons for doing so were:
a. She lived in a none floor bungalow so there was no upstairs. b. She never had a business to either go out to attend to or to attend to at home. c. Her husband, Ernest, had been dead for 10 years.
When she told me such things I expressed an interest in her doings even though I knew they were delusions. Setting her right about them would achieve what? ...
My sibs told her that she had no upstairs, no children, and that Ernest was dead. This always upset her. I told them that if she needed to think Ernest was coming through the door any minute, why kill him again? She suffered enough the first time he died without their bumping him off every few days when her delusion renewed itself.
My mother didn't always know who I was during her final years, but our visits ever always pleasant because I never contradicted her. Had I discovered her in the act of swallowing razor blades that she thought were medicines, we would have had a disagreement at that point.
Her delusions were harmless, she was never going to get over them, it was part of irreversible dementia, and they made her happy because they allowed her to visit times in her life when she could be up and doping and serving others. Only a churl would deny her that.
So, please be kind and considerate to the elderly in your care. Consider their wants and needs and don't try to re-invent the wheel just because it has got a few flat spots.
Every effort we Caregivers can make to make their sunset years comfortable, pleasant, and untroubled is worth while. Who knows, it might be possible for us to pay them back, at least in part, for all the care and attention and all the sacrifices they made to nurture us in our infancy when our needs were almost as great as theirs are now.
May God grant you the insight and strength to be a strength to those you care for.
Is this person from an agency or did you hire her independently? If not from an agency, I would get in touch with the council on aging for your county, and get a list of professional organizations providing home help and talk to them about places that have received positive reviews. An organization allows you to replace the person, if they are not doing what they are contracted to do, etc. It sounds like she is taking advantage of you and the situation. .
Oh how we endure! My husband is the person I care for. I have hired in home help...but. There is a but. I know this person whom I pay is good with my spouse. I will not take that away from them. However as a live in getting paid, my food bill has increased horrendously, they are on the phone a lot, and going through over a hundred of bottles of water a month. Now, I am dependent on their help. I have tried other agencies for in home help and they failed, horribly. I am in a place where I do not have friends, family or anything.
It is not the caring for my husband so much as the other things I have to go through. I have had him in a long-term care facility and the care was so bad, I could not watch him be humiliated any longer. He is much happier at home. He is 80 and I am 57. He is still able to recognize me in his mind. Hard for him to say my name, but he always smiles when he know it is me. I just to day said I wanted to run away, but not from him. I say me. I feel overly overwhelmed.
The live in gets more rest than I do, eats more of my food and get paid a handsome salary. Lately, I have been so depressed, and feel what more can I do to keep my husband comfortable? I started back to college and loving it. But again it seems that my help wants to be off at 5:00 pm, classes are at 8:00 PM and from Wednesday to Tuesday of the next week I do homework. It is funny when I am on the phone, business or otherwise, my helper comes closer to me on the other phone and I have to try to hear over her. Oh, on my other line, too.
As I said I am tired of dealing with the third party in this caregiver thing, but I know I need help with my husband. It is the good help!
Recap: 1. Paid help living in my home, getting paid over $500.00 per week, insist she works from 8 - 5. 2. Eats more than I do, do not buy own food, wants to be paid at a particular time, then gets paid and works less, until a couple of days close to next pay day. 3. Feel they are entitle to their time off and wants more money....Uses more everything in my house more than I do. Will buy junk food but not real food or water, sends their money home...When I look for something (food) in cabinet that I know was there is gone but they fed my husband??? It goes on and on. I feel I should let her go but then I will not be able to take care of my husband alone. Oh yes, when he is sleeping during the 8 to 5 she is sleeping or on the phone or eating. But wants to be paid. I could right a book.
I enjoyed this article. I love my 94 year old Mom, but some days dealing with her is very difficult and I know has affected my health. She has a number of serious medical conditions, so I'm always waiting for the next crisis to occur. She was always a controlling type of person, and now with serious medical problems and having to go into assisted living, she can get very intense and angry over things that don't rate that response, and her outbursts are often directed at me. It is good to know there are others going through the same, or worse situation. My younger brother does as little as possible as he is "still working." I don't want to make Mom feel badly, but in taking on all of her affairs I find that I cannot get projects done at my house, that have been postponed since her initial stroke 12/2011, or travel for any length of time, etc. As I develop some health problems myself, I wonder if I will be able to take some of the trips my husband and I had planned to do in our retirement years. This has to be the most difficult situation I have been involved in. I appreciate everyone's thoughts, as it is good to no you are not alone in this journey.
Really tired: It's good that you are in control & feel you're not headed for a breakdown. However, why not look into Medicaid for the elderly in your state for either having her housed in NH or supplying nursing care at home for a few hours a day so that you can have some rest & relaxation for yourself? CARE for yourself/ourselfs.
I have felt almost every bad caregiver thought. When it have complained to others including the local area office on aging, my doctor, friends (who are beginning to avoid me because I am just unhappy and angry) everyone says get help, take care of yourself. However, we fall just outside the income guidelines for any help--in-home or respite and we do not have the financial resources to pay for this expensive help. There is no recourse. While getting respite is a sound suggestion, respite is only available to those of means. We live month-to-month, I have lost my job because of caregiver responsibilities; work from home implies the ability to meet deadlines, be reliable, etc. However, caring for a person with dementia does not allow for being focused on anything (other than them) for too long. So I am trapped. I am the last one standing in my family so there is not other family member to step in. Its an undue burden on my friends to ask them to step in and face the incontinence issues (fecal matter explosions) that have to be cleaned up...on and on. Nobody really wants to know, in part because my friends are either going through the same thing or just had their parent pass away and are themselves exhausted, grief-stricken--basically recovering from their caregiver responsibilities. The only feeling that I don't have is my mother being unappreciative; she really appreciates me taking care of her in my home and begs me not to place her in a nursing home. For six years I have filled out every elder-care related form in the county. Not only do they have long wait times for decisions but they require a production of documents that are not readily available for a 90 year old woman with dementia. I have had to do a two day turnaround of 785 miles to travel to get documents form government agencies just to comply with document requests. At this point, I am losing my mind with frequent sobbing, screaming meltdowns. After this last round of applications for help from the VA, I am neither mentally able nor willing to fill out any forms, wait for months (sometimes over a year) for an agency's decision on whether we qualify for help. I am probably going to have to dump my mother on the emergency room of some hospital and tell them that she cannot live with me. I am going to have to do this but I don't know how I will cope and live with the guilt, pain, and memory of that scene. It seems that if you worked all your life, participated responsibly in society but did not make a shed load of money, there is no help. Everyone uses the term "the family" with help but we are a family of two. And yes, I wake up crying many, many mornings wishing I were dead rather than carry on this existence. I will probably never get my professional and social life back as I knew it--people have been moving on, retirement, new positions elsewhere, etc. My religious beliefs are probably the only thing that has kept me from self-destruction. For me, respite (which I desperately need) is only a concept kind of like the concept "the family" will help out. Okay, I am finished with my rant for today
Thank you for this article. I could say, my thoughts exactly. I rely on my good friends as a sounding board and walk my dog (she walks me) when I need to get OUT now! I also rely on this community and the support we all get/need from it. Thanks to all for your compassion. This IS HARD.
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10 Common Caregiver Confessions
If the solutions were practical, I wouldn't have this problem, and I bet this goes for most people reading this.
- You've taken on too much.
* Well, I feel like too much has been dumped on me, and there is no one else to take care of it.
- If you don't take a break, the resentment is bound to turn into caregiver burnout, which may lead to depression and health issues of your own.
* Once again, who else is there? My wife abandoned me with our two kids after our daughter died and cut them off. While I was trying to manage them, my youngest sister became psychotic. I have one sane sister, and she and I worked endlessly to get her into treatment, which lasted a year. While she was in treatment, my father was diagnosed with cancer and eventually died, leaving me with 50 years of paperwork that I brought home in garbage bags and boxes and sorted through for almost two years, finding everything from 45 credit cards, many still active to gold coins to active and inactive brokerage and bank accounts. It took me two years to make sense of it, while my sister and I coped with our mother, who has dementia and our psychotic sister. I wound up setting up a Medicaid trust for the house, finding a long-term care policy, setting up a special needs trust for my mentally ill sister (who, now medicated, is rude and snotty and angry and has borderline personality disorder - she's a gem), getting a proper power of attorney, will and healthcare proxy set up for my mother, and sending my brother 20 years of tax records that I found that my father had done for him - he hasn't worked since getting released from prison in a far-off land 10 years ago (and of course, I did numerous favors for him while he was in prison, including working with the embassy to get him into his own cell, because 6 members of that country's mafia was picking on him when he was in a 7-man cell). He's also more trouble than he's worth. That was 3 generations at once to care for.
Somehow, my health is amazingly good at 61. However, I feel like I'm being punished for being healthy, because so few of in the family are. It would be nice to take some time off and ride a bike for a week or have a vacation. Some years in the past 6 years I've had as long as a week, and twice I've had as many as 7 days of vacation, plus 2 weekends.
- It seems like there is no end in sight.
* My mother is healthy physically, and still plays golf and tennis. Two doctors have told me to plan on 10 years. I don't see the resources lasting 10 years, so I'll have to invade the Medicaid trust, unless she gets Covid, which I really don't want her to do. We're doing whatever we can to keep her in her home right now, because assisted living places are lonely and miserable during Covid, and have high infection rates. I'm also supposed to be the trustee for a special needs trust for my mentally ill sister, who is younger than me. I see no end in sight - constantly picking up one generation or another who has fallen apart or who refuses to be compliant (if my sister goes off her medication again, she might wind up in jail - she almost did the last time). To me, she is not a loved one but a loathed one.
I've been told that it's great that I had the ability to set up trusts, to decipher my father's financials, figure out how to work with attorneys and accountants to set up my mother and to be able to clean up my father's mess, because many people are unable to do that. Once again, I feel like I've been punished for having abilities. If there is any inheritance, I get the same as my jailbird, angry brother, who contributes nothing and probably can't, and sane sister, and my mentally ill sister gets more.
- Everybody constantly wants a piece of me, and there's nothing left for myself.
* Yup. Fun is gone from my life. I'm an indentured servant, miserable and going broke because this weirdo family has also gotten in the way of me making a living.
Why bother?
Where is their concern for their 85 year-old father? Why don't they visit him in his home? Why don't they realize that I provide a supportive, loving environment for their father? Why are they incapable of examining their own motives in their legal efforts to gain control of his financial affairs. Why don't they realize that their father would be paying for care if he were in a care facility? Why do they purport to provide better care by yanking him out of his home and adopted city, where he has lived for over 40 years? Why does money and assets always seem to be the root of adult children's issues. Why don't they grasp that yanking their father from the East Coast to live with them might actually shorten his life? Why can't these so-called adults be honest about their true motives?
I need to take issue with #10. One and a half years ago a doctor recommended placing my mother on hospice. While I was of course upset, I was also relieved. I thought I can do this for 6 more months. I saw the light at the end of the tunnel and changed my behavior accordingly. I shortened vacations, gave into her demands, etc. I grieved.
But after 8 months there was no change in her health and she no longer qualified for Hospice. We had to adjust to life without the extra aides. Which was very stressful. I've been giving into her and can't get my life back.
I have been taking care of my mother in one form or another for 11 years, pretty intensely for 6. She is currently in a nursing home. She is completely bedridden, refuses to get out of bed and must use the Hoyer lift when she does for her weekly shower.
I'm sure the doctor thought he was doing the right thing, but he didn't have a crystal ball and he didn't do me any favors putting her on Hospice. I often here that people wait too late to put people on Hospice, but there are problems with putting people on too early too.
Thank you for your kind words. I only meant that I feel like I have no life sometimes being a caregiver. I'm not depressed etc. just stressed and exhausted but I am thankful that my parents are still here even though Mom can't communicate very well anymore. Given their ages it's always on my mind that at any time I'm going to get a call that one of them has passed or is being taken to the Hospital. Or every time I hear a siren it's one of my parent.
Hardly anyone wants their parents to die and when various diseases hit them, we do miss being able to talk with them. I would imagine that your parents missed having their parents around when they died. However, they continued on with life.I don't think they would want you to just stop going on with life in the future although I know one person who became depressed and basically paralyzed for a long time after their parents died.
Your post sounds like you are deep into anticipatory grief and given their ages who knows how soon that may become a reality. Yet, loosing them does not mean you are loosing your own life for you still are alive and have your life with your husband.
Take care.
Medicare never has paid for a nursing home. It only pays, for about 100 days, after someone has been in the hospital and is then sent to a nursing home for rehab and their progress is reported to medicare.
If someone has private pay or has long term care insurance, then there are various therapies that medicare will pay for but the person must make progress or medicare with stop paying.
Medicaid will pay for a nursing home for those with a demonstrable need.
And I need advice on caring for my mother and caring for myself
MRI’s and how my mother conducts her daily activities suggest that she has some form of early onset dementia. She is 60. I am about half her age and never saw this coming. I am trying to process the plethora of emotions I have experienced in the past two weeks ,when she did her latest MRI, although this is something that has been hovering since 2007.
I am seeking advice on how to support my mother and how to have a life while I do so. I am so afraid of getting wrapped up in her care and realizing I have spent a decade as caregiver and given up experiencing life.
Some of the things I feel
ANGER that my mother is experiencing this at such a young age. She has had a hard life and this has struck right when she retired and she should be enjoying life; I also feel anger at my relatives who have taken 7 years to realize that she has a problem, as I have been saying, but now are armed with criticism about me not focusing on my mother. I try to get away occasionally with my partner, spend a few nights or a weekend, as I always feel drained after a day with her and this is looked down upon.
FEAR. I read this forum and my heart stops as I see where this disease can progress to… my mother eating napkins and not knowing me. I can’t breathe when I think of it. I also fear this ruining me financially. My mother has a pension but it is no much, and she already needs so much medical tests and medication. Most of all, I am afraid of stalling my life to care for her. I genuinely have no desire to do this, as I see it as pointless. I want to be active in a care regime for her, but I cannot be her primary care giver.
GUILT. I spend so much time wishing this disease could just go away and wishing I was not “stuck” taking care of her but could be traveling, calling her with my problems and for advice… I WANT TO BE THE CHILD! Then I feel badly because I know she did not choose this.
RESENTMENT. I struggle with a latent resentment because although I know this is not my mother’s fault, I feel as if she has always been clingy and now she is an extreme version of this. She separated from my father when I was a child and I feel as if I have been a surrogate spouse and a friend all these years. I moved away from home, as I was determined to be free and enjoy my life, but she heaped much guilt on me for doing so, in a way I grew to see was not normal. How do you tell your teenage child who is seeking to learn and grow “you abandoned me!” She is a loving woman, but I feel like she could have done more to have friends and maybe find love again and encourage me to go out and experience life, instead of be her constant companion.
I also resent that I feel like I have the burden of an adult child. I have not had any children, but I feel like I am already a mother and wonder what energy will I have left for childbearing. Lately, my mother calls me about every ten minutes to do some task or answer a question… as much as I love her, I find it burdensome.
FATIGUE. Some days I want to run away. I have a sibling, but they have not reached out to help take care of my mother. They have not had the best relationship because my sibling was rebellious and my mother, OCD, took this very seriously and personally to the point where it made her deeply sad and established a wedge between them. Also, it is hard because in the past my sibling has not shown themselves to be trustworthy, with things like money. So I shudder at the thought of them handling my mother’s money or worse, me having to enter into any financial agreements with them to pay for things for my mother. I find myself hoping my sibling never had to be a part of this caring picture, as navigating around them with issues that require trust is just an added burden.
SADNESS. When my mother looks at me to ask me a question when she is confused, I die inside. I go to the doctor with her and we sit in the hall waiting and she asks Why am I here? I hold it together, but I feel so sad.
GRATITUDE. When my mother asks me a question I just told her answer to, especially in public, I feel grateful that I can be there for her. I sometimes want to open her head and look at her brain and make it work. I wonder what has made her confused… and I am grateful that I can add clarity, if only for a moment. Sometimes we go somewhere to do errands and I can tell she has forgotten why she is there but once she sees me she relaxes and I am grateful that she still knows me and that my presence brings her comfort.
APATHY. Some days I have hope that we will find that she does not have dementia. But some days I think honestly about her decline over recent years and just accept it and plan. I plan for how I can get in home help, which seems so unaffordable now, and have a life and think about what I will do when she no longer knows my name. I want to hope, for her sake, but I don’t. Instead I just await a trrble end.
One of the cold, hard facts of life is that elderly people can become cranky, noisy, and demanding. Closely allied to that fact is another fact, namely that some caregivers will allow that behaviour to get under their skins and make them hostile or ungenerous to wards the objects of their care. That way lies tragedy.
It is essential that hurtful comments from the cared for are not allowed to poke through the skin of the caregiver. That's rule one. A hard rule, but once it is mastered, then life gets easier for both parties, and for any others that may be involved.
Remember, when Mum or Dad says you are tryiong to pouison themm, steal their money, make them pay for your vacation, etc, it is not the parent you once knew talking to the child they once knew. The circumstances have changed and their fears may have become real to them. I will give an example or two.
My mother died at almost 93. I was the only one of her children that she did not rant and rave at. My sister says it is because I was always her blue-eyed boy. That is NOT the way I remember our relationship. However, that's rain off a duck's back to me. A flea bit to an elephant.
Mother would insist that she had been 'out on business, 'upstairs with the children,' or that her husband' would be home soon and she was getting dinner ready for him."
My sister and brother would argue with her telling her that she was wrong. Their reasons for doing so were:
a. She lived in a none floor bungalow so there was no upstairs.
b. She never had a business to either go out to attend to or to attend to at home.
c. Her husband, Ernest, had been dead for 10 years.
When she told me such things I expressed an interest in her doings even though I knew they were delusions. Setting her right about them would achieve what? ...
My sibs told her that she had no upstairs, no children, and that Ernest was dead. This always upset her. I told them that if she needed to think Ernest was coming through the door any minute, why kill him again? She suffered enough the first time he died without their bumping him off every few days when her delusion renewed itself.
My mother didn't always know who I was during her final years, but our visits ever always pleasant because I never contradicted her. Had I discovered her in the act of swallowing razor blades that she thought were medicines, we would have had a disagreement at that point.
Her delusions were harmless, she was never going to get over them, it was part of irreversible dementia, and they made her happy because they allowed her to visit times in her life when she could be up and doping and serving others. Only a churl would deny her that.
So, please be kind and considerate to the elderly in your care. Consider their wants and needs and don't try to re-invent the wheel just because it has got a few flat spots.
Every effort we Caregivers can make to make their sunset years comfortable, pleasant, and untroubled is worth while. Who knows, it might be possible for us to pay them back, at least in part, for all the care and attention and all the sacrifices they made to nurture us in our infancy when our needs were almost as great as theirs are now.
May God grant you the insight and strength to be a strength to those you care for.
It is not the caring for my husband so much as the other things I have to go through. I have had him in a long-term care facility and the care was so bad, I could not watch him be humiliated any longer. He is much happier at home. He is 80 and I am 57. He is still able to recognize me in his mind. Hard for him to say my name, but he always smiles when he know it is me. I just to day said I wanted to run away, but not from him. I say me. I feel overly overwhelmed.
The live in gets more rest than I do, eats more of my food and get paid a handsome salary. Lately, I have been so depressed, and feel what more can I do to keep my husband comfortable? I started back to college and loving it. But again it seems that my help wants to be off at 5:00 pm, classes are at 8:00 PM and from Wednesday to Tuesday of the next week I do homework. It is funny when I am on the phone, business or otherwise, my helper comes closer to me on the other phone and I have to try to hear over her. Oh, on my other line, too.
As I said I am tired of dealing with the third party in this caregiver thing, but I know I need help with my husband. It is the good help!
Recap: 1. Paid help living in my home, getting paid over $500.00 per week, insist she works from 8 - 5.
2. Eats more than I do, do not buy own food, wants to be paid at a particular time, then gets paid and works less, until a couple of days close to next pay day.
3. Feel they are entitle to their time off and wants more money....Uses more everything in my house more than I do. Will buy junk food but not real food or water, sends their money home...When I look for something (food) in cabinet that I know was there is gone but they fed my husband??? It goes on and on. I feel I should let her go but then I will not be able to take care of my husband alone. Oh yes, when he is sleeping during the 8 to 5 she is sleeping or on the phone or eating. But wants to be paid. I could right a book.
What's a girl to do?