I have been caretaking for my mom now and my dad before he died of cancer 5 years ago. after my dad passed i moved in with my mom because she was lonely and needed help to stay in her home.
its been 5 years now. I have no life, no help and feel like i am losing my mind. I get very upset when my sister refuses to give me a break. she says mom wont stay at her house..and she cant stay here. i also caretake for my special needs 21 yo daughter..my sister wants my girl to go to a group home because she stresses out mom sometimes. I'm supposed to choose between the two. not an option.
my brother came out from the midwest but is ready to go back because of the stress.
I feel like our little family(mom jen and me) are all by ourselves.have a big family that is to busy to come around so we never see anyone.. I guess I'm rambling..Feeling like running away and hiding.not an opton. I guess I'm feeling a bit overwhelmed.. I don't know why Im writing this.. maybe someone else can help me cope with everything
When I get old, I hope you understand and have patience with me. In case i break the plate, or spill soup on the table because I'm loosing my eyesight, I hope you don't yell at me. Older people are sensitive, always having self pity when you yell. When my hearing gets worse and I can't hear what you are saying, I hope you don't call me Deaf!, Please repeat what you said or write it down. I'm sorry, my child. I'm getting older. When my knees get weaker I hope you have the patience to help me get up. Like how I used to help you while you were little, learning to walk. Please bear with me, when I keep repeating myself like a broken record, I hope you just keep listening to me. Please don't make fun of me, or get sick of listening to me.. Do yo remember when you were little and you wanted a balloon? You repeated yourself over and over until you get what you wanted. Please also pardon my smell. I smell like an old person. Please don't force me to shower. My body is weak, Old people get sick easily when they're cold. I hope I don't gross you out. Do you remember when you were little? I used to chase you around because you didn't want to shower. I hope you can be patient with me when I'm always cranky. It's all part of getting old. You'll understand when you're older. and if you have spare time, I hope we can talk even for a few minutes. I'm always all by myself and have no one to talk to. I know you're busy with work. Even if you're not interested in my stories, please have time for me. Do you remember when you were little? I used to listen to your stories about your teddy bear. When it comes time and I get ill and bedridden, I hope you have the patience to take care of me. I'm sorry if I accidentally wet the bed or make a mess. I hope you have the patience to take care of me during the last few moments of my life. I'm not going to last much longer anyway. When the time of my death comes, I hope you hold my hand and give me strength to face death. and don't worry.... When I finally meet our creator I will whisper in his ear to bless you. Because you loved your mom and dad. Thank you so much for your care. "We Love You"
Jontur, I'll jump on the wagon here and agree with the thread and with you. I'm alone in many ways. Two years ago my vision went bad and I've had a series of eye surgeries (both eyes). I haven't driven in two years - in fact, my license is expired. My husband works and I am stuck at home every day and, until recently, my activities were extremely limited.
My main function has been the long distance care of my Mom, many phone calls each day and calls trying to get another sibling to get involved with Mom. (Our parents retired to an area almost 3 hours from the nearest (disabled) sibling. I'm 8 hours away.) I've traveled all day by public transportation to get to Mom when it was impossible for my hubby to get me there by car. We all do what we feel is necessary in our situations.
Despite my vision problems, using magnifiers, I help Mom with financial issues and things that just overwhelm her. I've found appliance manuals online when she couldn't remember how to turn the oven on!
All of this is frustrating because I can't just get in the car and do what needs to be done. And I can't get anyone else to see how Mom's quality of life is falling apart. She tells me all these things but no one else. She hides the problems because she is afratid of loosing her "independence".
I know there are "in home" care services available. I've spoken to one trying to get help for Mom. (She kicked them out and then wouldn't let them in again.)
If you can't get good samaritans from within your family or friends, how about a local church? That's the least expensive approach.
In NJ, there is a company called "Griswold". The cost I was quoted was less that $20/hour and they will come in for just a few hours a day a couple of days a week. They will do anything - bathing, dressing, housework, cooking, shopping, just plain old companionship - whatever you need, including some medical services. I know this company has franchises in other areas and there are other similiar services.
Yes I can relate and agree with you all except that I am Caregiver only for my mother who is 86 and depends on me for all of her basic and financial needs. I can not imagine what I would do if I had a Special Needs child to care of as well. God Bless you over and over. I can only sadly say that immediate relatives and other family relatives and friends including church members, all run and hide when you mention the word H-E-L-P. My brother and his wife are very wealthy yet do not want to hear about what is going on here. My mother needs a very expensive medicine when she has an attack of pneumonia which happens just about every winter. I have even offered my brother to pay half so as to be fair about the large expense of the drug. He refuses to hear it. I then have to beg her doctor to either give her samples or a generic drug to take its place. So Selfish. I once was told that it is you and God against the world and I now believe this is true. You dear caregivers are in my prayers.
Now my wife is in late stage dementia and also in Depends. There is no way anything could keep me from caring for her in my home. We have a caregiver/housekeeper 4 hours a day, 5 days a week. I am so much more happy as things are that when my mother needed me and I will be happier the rest of my life.
My hat is off to you and to all the other care giving children that are assuming the burdens as you have. Maybe the rest of your family doesn't appreciate what you are doing but you are secretly awarded extra points among we humanists.
Sounds like you might want to start interviewing other assisted living centers or nursing homes. They all aren't terrible and give poor quality care. There are wonderful places out there with the staff to give your grandma the hours and attention she needs and, from what you say, she demands a lot. You are too young to be devoting night and day to her. Remember, working in health care for 12 years does give you some knowledge of what to expect, but at the end of your shift, you got to go home and decompress. That is much, much different than the 24/7 responsibility. Your family and your health are at stake. It is exhausting and difficult enough to care for someone who is sweet and appreciative, even with dementia, but it is another to put up with abuse from someone who has all their cognitive faculties.
Where are your parents, aunts and uncles? Someone of that generation should step up to the plate, not you! Or is it that grandma’s nasty attitude through the years has turned them all away from any desire to care for her in their homes?
Your family and young children need you to be there for them right now. They have full lives ahead of them and, as their mom, it is important that you give them the love and attention they need from you. Remember, your grandmother had the privilege and joy of raising her children and devoting her time to them when they needed her. Don’t cheat yourself and your children out of the same joys.
It isn't fair either, to subject your family to neglect and make their lives, and yours miserable because grandma is a grouch. And, at 86, she ain't gonna change. I don't think your grandmother will be happy no matter what you do or where she lives and all that is going to happen is you will miss those precious years of being a mother to your children. And, more importantly, your children will lose those beautiful and very important years of having you as their soccer/baseball mom. Time goes by so fast and you will never get these years back. There are no second chances or repeats. IMHO, don't give up this very special time in your life to care for someone who will only suck the life out of you and your family. You, your husband and children will miss way, way too much because you are tied to someone who is miserable and demanding.
Plus, her attitude will definitely affect your children’s outlook on life. Yes, we need to care for those we love and sometimes it is a good experience for children to learn lessons of love, giving and caring for family members as they grow old, but not when it may have a damaging or negative effect on their lives and future. Just a few thoughts to ponder. Best wishes filled with prayers.
I love and accept my sister for who she is. I just wish she was a bit more helpfull.(alot more) I try to have low expectations so i don't get so pissed and frustrated at her.. it is what it is and hard as it may be i must accept her for the good and the bad..Keeping in mind she is who she is and I guess that is the way it is.. I know that if she had mom she would put her in a assisted living facility.. I can't and won't let that happen.. She would completely give up and die within months I beleive..I don't think i can do that to her..NO MATTER WHAT.. Again I can't thank you all enough.. God bless you all and the loved ones you are caring for..
All the above advice is right on. If you don't have all your ducks in a row your compassionless sibling will come in and make duck soup out of you. I know it's overwhelming but do as I did and take it one little step at a time. Each day I tried to make one phone call and cover one situation.
My brother who volunteered to care for my mom 5 yrs ago was abusing her and her credit cards, so when I took over, mama was almost dead. Literally. We expected her to live maybe two or three months. I dealt with all the ugly stuff, the diaper changes, hand feeding, diahrrea explosions etc. All the things he refused to do for her while just waiting for her to die. He actually said to me that her death would be a blessing. He was retired...I had to quit working and take over. Thanks goodness I had a 10 yr old POA that I never mentioned to the family. I took the credit cards and her check book. I let him stay in her house, but with the understanding that mama was no longer paying all the bills. Her credit cards had been charged up to $40,000. I'm still dealing with her creditors. I sent them all a letter and the Dr signed a document stating her health issues. Basically I told them to go whistle for it that she was not in any condition to pay them back and I sincerely hoped they had insurance to cover such losses. All the credit was in her name only so nothing will come back on any of her children even the abusing brother.
Anyway, all that to get to this. It's important to get help with the legal things now while she is alive. Don't worry about what your sibling will think of you. She/they will not be charitable and will screw you without batting an eye. I may be assuming too much in your case, but in mine....my brother would back stab me in a flash. Now I have all the leverage. Of course, I have Mama too and she is back in good health from the loving care given to her. Call Hospice. Let them evaluate the situation. If that doesn't work, there are home health companies that take medicare and it won't cost you anything. Let that be one of your first phone calls. You can buy POA forms at Office Depot also Wills of every kind. If you are not on meds for depression, check that out with your DR. It's almost impossible to do this job without getting depressed. The meds are a godsend.
All this advice may be unnessary because you've already done it, thought about it or in the process of doing it. Forgive me if I'm preaching to the choir. We caregivers can't help but try to care for each other. Basically because WE CARE.
Hope things work out for you. Let us know.
Ann
Sorry I am long winded again, but I am concerned about you and you NEED, no, you HAVE TO GET HELP!!!! I hear the desperation in your writing and if you don’t get someone to help you with the burden of caring for your mother, they will be burying you long before her. I am almost 99% certain your heart attack and by-pass surgery were precipitated from the stress you have been under dealing with your parents and useless sister. No offense, but what kind of heartless people are they anyway?
PLEASE make an appointment TODAY to talk with your doctor and cardiologist about your situation. Let them know the stressful conditions you live in and tell them you have to have help from somewhere. Ask them to connect you with a social worker who can help get you to the right people in the community. Your health insurance policy should cover those expenses. There are numerous services out there that may be able to help you. I don’t know your current health status, except your nerves are shot. How well have you recovered from your surgery? You might qualify for disability. Can you afford not to work and stay home caring for your mother, or will you need to find another job? How long can your brother, realistically, stay with you? Doesn’t he have to get back to a job and family? Could he take your mother to live with him for part of the year and you take her the other part?
You said you moved in with your mother because she was lonely and couldn’t stay alone in her home. You haven’t mentioned the degree of her physical and mental capabilities. There are adult day care facilities you could take your mother to for a few hours a day or a couple days a week. There she would meet other people her age and limitations and have shared interactions, hopefully making new friends. She might enjoy getting out and socializing. The stimulation would be good for her and it would give you both a break and change of pace. They have centers specifically geared to Alzheimer patients if her mental state is slipping. Does she have any friends left? Possibly they could meet for lunch somewhere. Pick them up, drop them off at a restaurant and go do something for an hour or so while they dine. Another service I think is offered by either the Alzheimer’s society or senior resource organization is where other people in the community come into your home and visit with seniors for an hour or two. They read to them, play cards with them and simply socialize. It is a wonderful service and it is free.
For you own health you MUST find some moments of peace and respite or you will be back in the hospital or worse. Remember, YOU are important too and DESERVE to have a life. YOU are a valuable person and have a right to be here and enjoy this world too! I had to remind myself of that when I was caring for my mother. When she was my age, she was free from the responsibilities of family and work, traveling all over with friends, playing golf and having the time of her life in her “golden years”. That is how it should be. My mother cared for her father for a month and the doctor told her it was too much and she had to place him in a facility that could care for him. I chose not to do that with her, but remembering the scenario somehow made me feel better when I was exhausted and ready to jump off a cliff. It took away some of my guilty feelings. I had a cousin going through the same situation with her mother and we used to ask one another, “When is it going to be our turn to play?”
PLEASE, PLEASE, PLEASE call you physicians TODAY and schedule an appointment!!! You MUST do this before your brother leaves!! From what I am hearing, it is imperative you get help. It is out there and you have to take the first steps to finding it before you get yourself trapped into the rut of depression and routine of 24/7 care again. Not only do you need someone to provide some respite for you, but I think it would be beneficial for you to talk with a counselor to help your mental state, as well. You sound like you are barely hanging on by your last, thin thread.
Care giving is very difficult mentally and physically and we all need support and help to keep us going. DON’T WAIT ANOTHER DAY!!! And, by gosh, use your mother’s money to pay for respite!
Also, if you haven’t done so, go talk to an estate planning attorney. From what you say about your family, you need to be sure you have all your bases covered and, at the very least, have POA. Believe me, things will get a whole lot bumpier as mom slips and with the sounds of your family, it is imperative you are covered legally. You need to be protected and have the legal authority to write checks for your mom’s living expenses when she is incapable of doing so. There are numerous things you must get in place immediately. Are you going to inherit her home? If so, you better get that legally covered or you could be on the street. Does she have a car? How about stocks, savings accounts, etc.? Who will get those? Does she have a will? Is she mentally capable of signing and planning her will? Does she have a living will if she needs to go on life support? There are an unbelievable number of aspects to be solidified and handled NOW for your own security and the ability to properly care for your mother.
Okay, again, enough of my ramblings. I wish you the very best and hope you find the help you need so you may have peaceful, protected and happy years with your mother. This should be a special time of bonding and sharing not unhappiness, depression and frustration.
Please let us know TODAY that you made those all important phone calls and have appointments scheduled. NONE of us can do this alone. Care giving is extremely stressful; we need help from every possible source available to keep us sane, healthy and legally covered so we may give the best care possible to not only our loved ones, but ourselves. Prayers and hugs.
No. She lived out of the boxes for a couple of months until it finally dawned to her the only one who might come was the Grim Reaper. Or she got her own place, whichever came first. After 3 years I got her into a senior citizens' residence full of screechy Puerto Rican women huddled up in corners and sounding like chickens chattering in a churchyard. The men were too old -- she doesn't date anyone over 30. She called them "fuddy duddies" playing papi chulos or has-been macho men locking horns in sterile testosterone contests and talking about torrid trysts they had Marilyn Monroe-ish women that exist only in magazines ... or their minds.
To make a long story short, she's still living there. In a microcosm of Puerto Rico where they can romanticize poverty, talk each other's ears off about ungrateful children, play bingo & dominoes, and build community any way they can. Good or bad, it's family.
You're a prisoner of caregiving. Your whole life revolves around it. Time is a luxury you don't have much of, and "free" moments are probably spent thinking about what else needs to be done, occasional phone calls to let people know you haven't completely fallen off the map. Maybe the only chance to recover from all that madness is an out-of-body experience here and there.
When I cared for Mom, one of my sisters would drop by unexpectedly to supervise. I'd always ask if she wanted French fries go to with her orders. In a nutshell, she wouldn't let me do anything to then say I did nothing. Last time I saw her she told Mom to pack and move in with her. Poor thing got boxes from the supermarket and even packed all my Charmin. To make a long story short, Mom waited and waited for Martha to take her to that heavenly house in Newark, NJ that no one has ever seen. (I searched on Google Earth where it's supposed to be, and all I found was a out-of-service, old gas station.)
Ok. ... Enough rambling for one night. Take care of yourself my friend, and don't be a stranger.
anyway now i am losing my job and my last refuge..my brother who came out to help while I was at work will probably go home to missouri now. I told him I really need him to stay. that before he came I was on the verge of losing my mind..I hope he stays..at least thru the holidays.
I think about doing everything by myself again and I feel a knot the size of a bowling ball in my stomach..I know if he leaves it will be like before he came. by myself with no help..I've got only my sister and brother in law and they aren't much help.. I'll give you an example. Since my dad passed 5 years ago(thats when i moved in with my mom) I have had 3 heart attacks and 4 way open heart surgery. While i was in the hospital recovering from my surgery my sister and brother inlaw came to visit. when i told them i don't know if i can keep up caretaking for mom, I was told that they expected me to buck up and take care of her. I was told that i owed them for all they did. keep in mind that i had open heart surgery on a friday and this was the next sunday..2 days after surgery..well that was a year ago and I'm doing what I have to do for my mom..
any way. I guess i just have to go with the flow right now..I will pray my favorite prayer all day; God grant me the serenity to except the things i cannot change, thie courage to change the things i can and the wisdom to know the difference..