I don't wish this on anyone......elderly care.

I agree about the elderly care. It's one thing if my husband or children need my care - they were MY choices and responsibility. I am an only child and my parents divorced when I was a small child. Fast forward through a dysfunctional childhood and adolescence until I escaped by marrying at 20 and then managed/constructed my own nearly normal life. Even then, through allegiance, loyalty, and love, I included them both in my life, allowing them to have a semblance of family and relationship with their grandchildren. "Holidays" needless to say were "challenging" at best. Neither of them had any substantive friends or family in their own lives. Fast forward to when they hit their 70's - I was caregiver for my alcoholic father for seven years while he battled lung cancer during the last two years of his life, my mother developed AD and I was doing dual care giving while finishing raising my own family and working a full time job. I am now in year 5 caring for Mom. It has been difficult to say the least. She always had a "unique" personality and the disease did nothing to improve it. Her hoarding habits went out of control and after a kitchen fire I knew I had to further intervene. Through unmentionable and horrific trial and error...I finally have her in a fantastic assisted living community. I have a GCM to assist me (at $100 an hour) and have hired a retired nun to help too. I do hands on care giving two to three times per week, plus phone calls and manage EVERYTHING from finances to medical management to activity coordination and pet care (YES! the facility allows her beloved cat). To end this long post..YES, I AGREE - I DON'T WISH ELDERLY CARE GIVING ON ANYONE.

This comment was for Roscoe

I understand the position you are in and how you feel--I'm in the same situation

Thankful for this site..I have been my mom's main caregiver as she moved 1 mile from me, also I just ended a marriage from an abusive alcoholic, and my son is having emotional problems, he went off for some reason and it scared me and I went on the roof of the house and called the police..my sibs call mom on the phone but they live maybe an hour away and work full-time..I have to go to the store for mom today and am not looking forward to looking at her bills, hearing about the meds, the gas she has, and I am allergic to her cat.I am broke and mom does help me some but then my sis sees her acct and I know she is thinking I need to get a job, for God's sake I have tried ...it sounds so horrible to complain but I know you all understand..:))))

Everything you have said is true. It is overwhelming, frightening, exhausting. There is an upside. When you become a caregiver, someone who is doing the right thing, you gain a strength, courage, and compassion that will enrich your life. There are decisions in life that defines us. You are a heroine, a mensch, a good person. What would you be if you refused and abandoned your mother?

People notice. Your community sees you at church, at the Dr's office, and at the grocery store. You gain respect.

Caregiving gets easier, you start to solve the problems, you develop a support system, siblings come around, that trapped panic feeling eases, you and your Mom develop a working partnership, and you work through your grief, and enjoy the precious time left with your parent.

You sound clinical depressed. Maybe some anti depressants could help your mood and coping skills. We are here for you, vent, scream, and cry, we understand.

Dear Roscoe, andcompanions in nightmare. What you describe is what must of us are living . I would like to add a tought: Taking care of a wife(my case) / husband, I believe is worst than caring a parent.
Any how, in any case is mandatory to think in ourselves first, because if we fail, they ar gone as an inmediat consequence.
Good luck!! and hugs

There are many who are not cut out for this demand, who are unable due to a variety of circumstances, etc. as you can see from hundreds of posts throughout this site, the job is hard, demanding physically and emotionally, financially. IT ALWAYS GETS WORSE, elderly do not get better, aging process continually makes things worse, traumatic events accelerate this...my point is, you are no good to your loved one nor your other family members if you have a breakdown.

If you see you don't have the skill set for the job now, cut your losses and hire care part time, full time, care facility or have a family mtg and jointly decide how to meet those needs. Maybe you can contribute in other ways without being the on site person.

Don't beat yourself up, stop feeling guilty, and realize your limitations...then be the best daughter or son you can and spend the quality team with your loved one without the burden of day to day care.

Make sure you have plan in place for your future and it is financed thru savings, retirement, long term care and insurance. Get you "aging plan" house in order now and get all your kids together and communicate your wishes and the plan.

We've done just that and now we are having a get together with our close friends in fall to designate someone to help our adult children with the decision making or pulling the trigger to get us in a facility when the time comes so they don't vacillate or have to deal with our arguing (under dementia or other) that we don't want to move or aren't ready. I want them to be free of that guilt and torment.

Roscoe, I hear ya. Taking care of my mother was a nightmare. I still have nightmares and depression from it and she's been gone almost 3 years. It was one of the most horrifying experiences of my life. My sister rarely helped mom much less me. Sister and I now only communicate through lawyers because my mother left a legal mess and my sister didn't handle any of it correctly as executor. My adult chrildren and I have very few fond memories of mom/grandma.
But we did survive and came out on the other side knowing what we do NOT want to go through when my times come.

Roscoe, perhaps caregiving is not something that you can or should be doing. You first have to consider your own health and there are facilities with trained people to care for your mother. If she has to go on Medicaid, then she can enter a nursing home if finances are a problem. That way you can keep your job, and I agree with you. Siblings who are selfish and do not care for others do not need a sibling who is. I do not speak to my siblings and my mental health is much better for it. There are alternatives. Contact your local area on aging and see what help anyone can provide. Do not give up!

There are so many things to deal with (being a caregiver) that people who are not burdened with it would never know what it fully entails......I 'battle' all the time with my mother with her not wanting to take her meds., you have to literally wait on them 'hand and foot', peeing/pooping troubles, laundry, preparing food, doctors appts., grocery shopping, picking up prescriptions, they're cold, they're hot, thirsty, hungry, they're tired.......I could go on and on. It's almost like they are fine and could function okay.....then boom, one day it hits and they completely changed and need help day to day from that point on. What's disheartening too, is that I've seen the steady decline over the years......getting old is a cruel process. It's terrible for all involved. It's depressing to the cargiver, it's life changing and the worst part for me is that I have siblings that won't help. When everything is 'said and done' later on......I will NEVER EVER have anything to do with my siblings again......no contact ever......we'll be through.

Roscoe,

If your siblings are unwilling to give up their time to help you care for your mother do you really expect them to give up their money?

I agree with everything you've written. I cared for my dad in my home for 5 years and I had nowhere near the issues I've read about here and I'm very grateful for that. But being a full-time caregiver to my dad was challenging enough to get me on the internet, looking for support.

There are so many medications and procedures and treatments to keep people living years after nature would have otherwise taken its course. I also cared for my grandmother in her home about 20 years ago. She was a nice little old lady, well kept, social skills intact but her mind was diseased by Alzheimer's. There was a period of time when she could carry on a very shallow, brief, polite chat for several minutes and people would always tell me, "Your grandmother is so sweet. You're so lucky you've had her for 93 years!" HA!! The last 10 years of her life she was out of her mind. I adored her and I watched her be eaten alive with disease. And people thought it was wonderful that she was 93. While I cared for her day to day it was my mother who coordinated everything and took care of grandma's checkbook. My aunt would call from out of town to discuss how everything was going and was instrumental in getting things done. My cousin stayed with my grandma overnight and on weekends. It took 4 of us to care for 1 little old lady with Alzheimer's! And from what I've read on this site we were damned lucky to have eachother.

And caring for my wonderful father.....he died a little over a week ago and he was the kindest, sweetest man I ever knew but being a fulltime caregiver warped my life. He was easier to live with than I was, I'm sure, but we had our issues. His room was stained with blood, I had to wear a Haz-Mat suit to clean his bathroom, and when he had to go into a nursing home no one told me that the caregiving continues. It's just different but I was still his caregiver for the 6 months he had to be in a nursing home.

It's not great or special when people get old and are riddled with disease and disabilities. There's no dignity in wearing adult diapers or having procedures because without them, you'd die. I work in healthcare and I used to work for an infusion clinic. Dialysis mainly. We had a gentleman who was in his 50's and 2 weeks in a row he carried his mother into the clinic to have dialysis. She was in a coma!!! He had her all wrapped up in her winter coat, hat, gloves. He brought a tote bag with him with her incontinence supplies. He didn't know what else to do with her! Years later when I was caring for my dad we never left home without a disposable pad to go on the passenger side seat, wipes, diapers, water, gloves. This is how we traveled. And after going through all of this with my grandma my mom and dad promised me I would never have to go through that with them. I never thought to ask them how they could guarantee that. Now I tell my own daughter, I warn her, prepare her, that when I turn 70 I am committing suicide because I will NOT put her in the position I've been in much of my adult life.

Like I said, my dad died a week-and-a-half ago. It hurts terribly. But my memories of him, at least right now, are of him whimpering and being terrified and trying to convince me that people were trying to kill him and begging me not to leave him. This man who used to carry me on my shoulders, who taught me how to fish and ride a bike (not at the same time) was so out of his mind when he died, not from dementia but from disease. He was also a member of MENSA and a college professor. And when I think of him right now I see him curled up against me, crying, while I stroked his hair to comfort him. Where is the dignity in that?

From Roscoe: I could go on and on with the craziness. Is it really so great to live to a ripe old age? The upper 80's and beyond is nothing but cruelty to all parties involved. For anyone who has never had to deal yet with an elderly parent......be prepared for a terrible life changing experience. I wish a million times that my mother was a healthy 50 year old now. My mother is a fall risk and I can't trust any caregiver handling her. I feel guilty complaining, but at the same time what did I do to deserve this torture. One last thing, since I have to quit my job, I'll have to purchase health insurance for myself. Don't you think it would be right for my siblings to contribute some money each month to help me pay my insurance premium? Since they aren't helping out any other way. I'm giving up everything and their lives continue on the same normal course. Comments?

Wow Patti4Mom, that sounds just like me! Every bowel movement is announced and I get all the details when he's done. My house is upside down, I've got pee stains in the carpet, broken cabinet doors, banged up everything from the walker. We should buy stock in Miralax AND Senna! A normal BM to my dad is liquid. Ditto on the siblings. And the two friends I talk to the most are both caregivers, so you can guess what we talk about. Hugs all around for all the caregivers, this is the hardest job I have ever undertaken.

Roscoe don't forget one day you will be elderly, so plan well, have enough money and people who can care for you if it comes to that. Try and find a support group and the fact you are writing on this site is good therapy. Let us hear how you are doing from time to time. And it will end one day, so there is a bright light at the end of the tunnel. Best wishes.

As far as the 24 hour sitters, I have a group of 4, 2 for week, 2 for weekend, and I just asked around town for suggestions. Sometimes homehealth will have suggestions, but mainly it was just word of mouth for me. Ask others in your area that have had to get sitters. My mom has been on hospice for 3 years, they are great, but still. My dad has had many health issues over the past couple of years, but the biggest was a stroke which left him somewhat debilitated, so the sitters actually do most of the day to day care.

We understand!!! I am in a terrible situation myself, and actually had to walk away. We just lost our Mom to Alzheimers, and was working to keep my dad at home. I moved in with my partner to take care of him. I work full time, am a student. When my mom died, my siblings showed up out of the blue after over 20 years and started creating so much havoc and chaos. My dad all of a sudden decided to change the locks and said I had to knock just to get in the house. It got much worse, and I in the end handed it all over to the rest of the siblings and said I am done. I, along with one sister had taken care of both parents for about five years, and my dad all of a sudden decided we were stealling from him. With the siblings involved, it was getting too much. I dont know if he has dementia, or what is going on for him to do this, but I cant keep caring for someone who changes the locks and has the rest of the family turning on us.

theres always a bright side. ive looked forward for years to my hair and beard eventually graying. in only 9 months of dementia caregiving this has become a reality. it looks very mature and distinguished . in your face rip van winkle..

Amen! I agree with everything you have said. I, too, feel like we are being punished for trying to do good. What really irritates me is when people say, "You'll be blessed later on". Maybe I will, but that is not helping me now-when I feel like I can go out of my mind at any minute. A blessing! Hah! Is it a blessing to be unappreciated, treated like a slave, feel like a prisoner and abused mentally and emotionally? I think not. The worst thing is that there seems no way out.

I know what your going threw I stay home with Mom I not going to say 24/7 but almost.She don't want me to leave the house for anything but I have to.I wish you a lot of luck

I totally agree with avidreader!!! Get ALL the help that you can and don't let your parent talk you out of this! Mine tried but when I almost landed in the hospital, I had no voice for three months and suffered from sheer exhaustion... life changed because I changed it! My one statement to my mother was this: "well, the stress of going to college (yes, I was a full time college student), working full time, and now taking care of you Mom - please don't take that as a negative - has just been too much for me to handle. I am doing the equivalent of two full time jobs plus school. If something happens to me, then what will happen to you? Who is going to take care of you. There is no one and you will be in a nursing home."
That is when life changed. I brought in Elder Services, met with the case worker, and together we talked to Mom. We developed a care schedule with Home Health Aides for six days a week, to shower and dress her, housework, and laundry. I got a neice to do the groceries which left me free to attend to doctor's appointments, blood work, and all other incidentals, which was an extensive list.
Mom went from this to assisted living, where she was not happy and did some really awful things that hurt her health - like throwing away her meds... that is another very long story... but it did more damage to her heart and kidneys. She is now in a nursing home and I have been systematically giving up control over things I thought I needed to hang on to. I didn't! what a relief it has been for me, I actually feel like I can breathe again. That is so sad if you think about it. I wanted nothing but the best for mom, but a sibling tried to gain control of her finances, God only knows the reason why. This created an element of distrust with her and it was difficult at times for her put her trust in me but I know I have taken great care of her and she is where she absolutely needs to be. She is happy where she is, she knows it is not what she really wanted but she needs round the clock care and doing that in the home was just not possible.
Bottom line... GET ALL THE HELP YOU CAN! If there are any CareGiver functions available to you - GO! It was the best thing I could have done for myself. I learned alot about the aging process and the things I was experiencing. It was comforting to know I was not alone!

Tanglewood,
What a wealth of information you have provided to Roscoe! I have just one comment, Roscoe, if you think that you may need to go to court for resolution, make sure you retain a litigator. I made the mistake of retaining an elder law attorney that specializes in wills, trust, estate planning, Medicaid planning, etc, but was not a litigator. Now I am into this by several thousand dollars without any result. It will require that we go to court. We had suggested mediation but cannot even get a response to that request.

Roscoe,

You're in the right place on this forum...most of us are in the same or similar boat. And I'm sure it feels like you're having to row it over class 5 rapids without a paddle!
Shame on your sibs for not helping. I do have a sib, but I'm her caregiver too because she's mentally and physically handicapped. Before Dad died from lung cancer (insulin-dependent diabetic and ALZ), I had to retire from my profession early to become full time caregiver and POA for all 3! I empathize with how difficult is is to maintain a positive attitude. Please please stay on top of your own health! You can't give what you don't have within you, so you must put yourself first.

I noticed on your profile that you live in Weirton, WV. There are some local resources that could provide services for your mother and give you some time for yourself. Make sure they're licensed and check their references. I've listed resources below.

Do you have an Elder Law Attorney? Findlaw.com has a list of 6 attorneys in your area that specialize in Elder Law: http://lawyers.findlaw.com/lawyer/firm/elder-law/weirton/west-virginia

Make sure your mother has the following documents signed and copies given to her PCP: Advance Healthcare Directives, HIPPA authorization, Power of Attorney (POA) for both Healthcare and Fiduciary, and a Will.

The Brooke County Senior Center:

The Weirton Center Also has many activities and programs to offer.

Senior Service Options Regarding Weirton, WV Senior Citizens

Senior Care at Home in West Virginia:
-Visiting Angels in West Virginia are another leading national network of non medical, private duty home care agencies.
-Senior Helpers in West Virginia is a national provider of professional in-home assistance services.
-Preferred Care at Home operates across 14 states within the U.S. and this organization provides affordable home care.
-Comfort Keepers and Right at Home are also widely recognized providers of in-home care to seniors

Weirton Senior Care Providers

Weirton Geriatric Center

Good luck Roscoe! Hang in there...

If it weren't for day care, I would not be able to do this. I have two siblings within ten miles that take advantage of the situation. I finally put my foot down telling one of them that if they wanted to take mom out she would need to be here to get her ready. She doesn't take mom out any more. That reaction to my request spoke volumes. But I will not cater and serve my siblings, mom is all I can handle. When sibs make a difficult situation even more so, why do you need them?

People think "Oh, just put them in Assisted Living or a Nursing home, your job will be done". And it certainly helps, there is still an awful lot of work. Especially if you have a needy parent like my Mom. There's a doctors appointment every week, for different aches and pains. If you don't go, you'll miss things causing you more work. There's laundry and errands and listening to the complaining and poop status reports. My Mom won't do the activities at her AL so I'm her only source of entertainment.

I'm Mom's only living child. In some ways I'm envious of those who have siblings to help out, but I often here of people like you that they don't, or the squabble.

You're right hat no one understands but those going through it.

Roscoe888, I totally agree! It's awful and even worse at times. It can be very isolating and extremely exhausting. My mom too gets constipated but she really likes prunes so that takes care of that! And boy do I hear you about siblings not helping at all. They truly believe that I was born to only be my mom's caregiver. Never do they think of me or my family. Yes, I have talked to them to no avail. So now I just avoid them and told my mom to stop pretending that we are a close family. That I will do all I can for her but that I need time for myself too. Because if I get sick then no one will care for her. She was getting way to dependent on me for everything and no she doesn't go to daycare because she has had PHN-shingles for five years now. I am also her provider so yeah.... Things are complicated. But, I wish you well and ALL of us caregivers on this forum. Really try to carve some time out for you. If not, we the caregivers can end up worse than our care receivers!!!!

Rosco888,...Today I read your post and was overcome with the realization that I to know how hard the life of a caregiver is, along with my husband. You have to be strong and resillient and yes give up life as you know it! We are locked into the vicious cycle of responsible care! No more can we make plans to do...... ANYTHING! This site has helped me to voice my frustrations in the roll of caregiver for my MIL. So take heart, you are not alone in your feelings. While every situation is different, we all have the same focus,...and that is caring for a loved one. The hardest thing we can give,....is time...! Here is a hug to keep you sane, for a while, (: Take care and Godbless

Where do you find the 24 hour sitters?

I am not to the point of putting her in a home yet. Sometimes it just helps to talk about it. Sometimes to vent is all that is needed.

Hospice has been our saviour. Dad has alzheimers, dementia complicated by symptoms from a stroke. They sent us home with hospice. It has been a little over a year. Never thought we would make it that far. Nurse comes one a week and aide comes daily to bathe and bring supplies. Hospice has meds delivered to the door. We also (finally after convincing my mom) got outside help a few days a week. One lady comes on Wednesday and stays from 10 until 4. Another comes on Monday from 8 until 1. It gives my mom a chance to go to the grocery store or even just get out and work in her yard and mow. You ABSOLUTELY MUST have some form of outside help. You CANNOT AND SHOULD NOT do it alone. Call your church. Ask friends. Even if it's only for an hour here and there. If someone offers to help, say yes. Give them a specific task. "Yes, I would love help on Friday afternoon this week. It has been ages since I was able to go to the grocery store". I know that I would rather someone ask me specifically to help than to just leave it open ended. Once you have been in this situation, you realize how vital your offers of help can be. Prayers for you.

The only way you will be able to maintian this level of care is to take care of yourself. If you become ill - who will step in? Consider "daycare" or Assisted Living, Home Health is an option also. Contact your local department of Human Services - Adult Protection unit. They will have lots of advice and can steer you in the right direction as far as help. Just remember that you count too!