New to this....it's a heavy load!

Hi Bev!

It does sound like you've got a heavy load. Let me first say I'm glad you have left the abuse of your husband, but I am sorry that you're getting the verbal of it from your mother as she is in her disease.

Are you getting paid by Medicaid to be her caregiver? http://www.caring.com/questions/faq-can-i-get-paid-to-be-a-family-caregiver

I know it is hard not to get sucked in. One of my favorite songs, called "Closer to Fine", has these lines:

Well darkness has a hunger that's insatiable And lightness has a call that's hard to hear I wrap my fear around me like a blanket

And yeah, it is tough. I will be thinking of you and directing positive thoughts your way that you will find some joy in the day that helps to mitigate the negative.

I fight against being a born pessamist EVERYDAY! When caring for my 94 yo mother grinds me down, I don't have the natural defences that an optimist has. No amount of what I call "happy horse****" platitudes help. It's hard to be optimistic, no one can teach you, you have to learn it yourself. Read posts here, reply to posts when you can. It may help to write in a journal. One thing that is hard to do is take praise or a compliment when given, so take this to heart. You are doing the best you can, and I believe karma will reward you later.

Ms Bev, I'm glad you've found us all. I think caregiving pushes us to our limits. It's a really hard/full/overwhelming job at times. I have no quick fixes. I only know that I have to run or walk up big hills or listen to really good music pretty frequently to keep my sanity, even if just for 10 minutes. I hope you make 10 minutes for yourself. You are worth it. Do what re-fuels you. Repeat as often as you can.

Hi Bev, Well Done for you courage and effort towards lifes trials. I wish you all the best in finding employment, coping with you mom and I agree with the post above do something for yourself. Life is for you to enjoy also!

Bev, good luck and godspeed. You need to take care of yourself. Local organizations and senior centers are a good place to start. There is something called respite care. Ask around. Contact the Florida Dept of Aging. Also, do look into getting paid to take care of your mom. Also, don't be afraid to hire someone to help. If your mom is low income or on medicare you might be able to get someone in, even for a few hours, to look after your mom. You also should consider learning to separate and not feel guilty. Moms are good at the guilt. If your mom won't let someone else in the house you can start to set boundries by letting her know it is going to happen whether she likes it or not. I care for my mom but she's not debilitated physically, not completely, but mentally she thinks she is going to die any day. I tell her I met death in the hallway and we shook hands that he can't have her yet because I am not done torturing her. It is always good for a laugh and reminds her, and me, that sense of humor is sorely needed. Also, I work so I don't see her all the time. I live down the hall from her. I put my foot down that I would NOT live with her. She wants me to to save money, which we sorely need to do, but I won't give up my life or my sanity for that. It isn't worth it. I am of no use to her or myself if I am depressed, angry, bitter or resentful. I have also told her that if she has a stroke and needs care that I will not do it. I have stated this several times so that she understands that there are limits on what I will do for her. I LOVE my mom and I LOVE taking care of her. This is a HUGE surprise for me because I haven't always liked my mom (understatement of the year!!!) but she and I have seemed to have found a new relationship that is working very well for us. I do not know what it will be like if she did have a stroke, heart attack, cancer or alzheimers but I can plan for the future. I can only think about today and only today. It really is all that we have. So take VERY good care of yourself. You are of no good to your mom if you don't. Pls, pls remember that. TAKE CARE OF YOURSELF!!!!

I pray every day for relief from the pressure I feel due to my situation. Having my own personal issues to deal with on the one hand while coping with my mothers on the other...well it's not an easy balancing act. I do my best to get out of the house as often as possible, and would get my own place if I could do so, believe me I would in a heartbeat!

Not having money to do the things I'd like to leaves me having to be creative...very creative with how to stay occupied while I'm with my mom. I have prayed for a job yet it seems that isn't to be at this time. And,I've looked into it, at this point in time, there is no way to get a paycheck in the state of Fl for care taking my mom.

One thing that has been a blessing is to see the improvement in my mom's attitude since I've been here. She isn't as combative, takes a shower every day without being reminded, sleeps sounder and longer, taking naps during the day as needed, and is more like her feisty self then she has been in a couple of years. I know it's due to my being here...and that in itself is a wonderful testimony as to why care taking of a parent is worth the effort. It's the last days of her life so why not sacrifice a little to help her live the best quality of life. I know she sacrificed for me when I was a child...this is a way to show her the love and respect she deserves.

I have had the same experience too - my mom is doing sooooo much better since I have come to Florida. It is that that really gives me the strength too. Glad to see there is some of that for you too. Keep sharing, keep posting and keep seeking out help. It will materialize, just keep seeking and taking care of yourself. I know I am harping on that but it is sooooo important. Take good care.

Oh one thing Bev, congrats on changing your life and leaving an abusive relationship. You should pat yourself on your back for that. I can only imagine how difficult that must have been. Good luck with everything, you are going through a lot of changes. BTW, I posted an ad on Craigs List to start a support group for people caring for aging parents. I received 1 response so far and I only posted the ad today. That is encouraging. I am in the Miami area and am really surprised I couldn't find a local support group. Maybe you can look for a support group in your area?

Bev-try contacting your local Agency on Aging to see what local resources are available financially... or ask if there are any that provide relief so you can refuel your self menatlly and emotionally. Medicaid payments to you for caregiving may be an option,and also there is a program for the spouses of veterans if she was ever married to a veteran and widowed...I hope you find some resources for respite care in your community. Are there senior centers in your community? Here in Texas our senior centers have lunches, crafts and other social activities where you may be able to take her and drop her off for her own social enrichment and it would give you brief chances to escape in the day to indulge in some "you" time. Keep updating and sharing...only those who have walked this road know the problems that come with the blessings...You are a light in this world with so many dark spots! keep on shining hon'!

Bev:

I may be able to help you. Where do you live in FL? I have a Occupational Therapy Practice & r connected to a lot of resources for your mom that could help you, as well as business. You can email me if your interested.

Good Luck Rhonda

PS: The elderly population is who I treat, so I get what you are going through

Thank you susieq for you advice. I know there are services for my mother to get her out...and I would take her if she would go out. She just turned 93, has very painful knees as well as the demetia, and doesn't want to go anywhere. Short of getting a forklift to carry her and her chair out of here, bringing her to places that would help both her and myself just isn't going to happen. She has not been social for a few years now and its not gonna change just because I make suggestions. She is from the "old school"...I am the youngest daughter of 5 children....there isn't much respect for me or my suggestions that would take her out of her "norm". Although I will continue to pray for guidance and change in that area...

And Rhonda, thank you for reaching out to offer with personal help..that is so sweet. I live in SW Fl...Fort Myers. I did go to one support group for care takers like myself, but didn't feel it fit me at that time. I know there are other support groups here, that meet once a month. But to be honest, once a month just doesn't seem like enough meetings for someone like myself who lives with a difficult case like my Mom's.

I would've emailed you by now Rhonda if I knew you're email address...not sure how to get it off this site if that's possible...anyway, blessings to all of you for sharing and helping me to lighten my load.

Bev

Bev-oh my, bless your heart...you really do have a difficult situation! My Mom loves social situations-but wants us to attend those with her. We do go to some with her, but it has severely restricted our ability to come and go freely...Even a simple overnight trip for ourselves involves a list of to-do requirements that are more complex than passing an act of congress. We always have family members tell us "call if you need help"... I should not HAVE to call people to help look after their family member...and when I do reach wit's end and call for help, they act like they are doing ME a personal favor and make me feel as though I am indebted to them in some way-just for doing the very thing for only one weekend that I am already doing for THEM all year long! I love my Mom dearly and want to give her a quality of life she deserves...but it does sometimes reach a point where it begins to make you wonder what happened to your own life... I am luckier than most, my husband is a saint at caring for mom beside me and doing many things I simply physically cannot do. I have seen many blessings come from my situation. But it is painful too. Wow, maybe you-or someone- could start a vacation care network for people who want to have a bed and breakfast for other people in the same situation...like maybe go visit (with your Mom) at a home where they are caring for a family member and could share the care while you get some change of scene and step out a little. Then trade for some visitation at your place for them to come with their family member...That would be awesome...

" to susieq428 I should not HAVE to call people" Wow how many times have I thought that!!! I live with and take care of my father who has moderate Alzheimers and probably Parkinsons. Don't see the relatives much at all. Which is a big part of my stress- I get really angry at all of them, but would never tell them how I feel . They obivously know I need help and Dad needs help- they don't want to deal with it. (My father has never been a fun person to hang out with, always critical and negative. ) To msbev-- I know I know, all I can say is hang in there. I have lived with my Dad for years now and have to do more and more for him. He has no hobbies and no friends- his only activity is sitting on the front porch and talking to the neighbors who walk their dogs!! He is, and always has been a negative person, looks around and only sees what is wrong. And of course now, he has alot to complain about personally!!! He gets upset and mad that the Doctors can't help him. and he forgets what they tell him, and what his medicine is for etc. But he has been on Aricept and Namenda a couple years now and it really has helped alot- thank goodness he has insurance and VA benefits. I finally got some Home Health Care for him also- only for a month right now, we will see if we can get more. Medicare pays for that. He can't take a shower by himself, occasionally he can, but not usually, so they've been helping him with that. The VA will pay some for the tub to be taken out and shower put in though- so I am working on that now. But he/I always need more help!! I work at night and worry about him- he has fallen several times. But I can not quit my job, that's out of the question- I seriouslly need my health benefits not to mention the pay!! I am thinking I need to look into Asssisted Living Facilities and or Nursing Home soon. It really sucks that Medicare will only pay for a nursing home when the patient goes from the hospital to the nursing home. So basically he has to fall and really hurt himself before he will end up in a nursing home. And alot of Nursing Homes are good places- sure it sucks to be there but alot of them are not awful like people say. My grandmother was in one for 5 years and all the people I delt with there were very concerned and caring. But again I know how you feel, I am about to call my Dr. to be referred to a therapist or something, I feel so overwhelmed sometimes with the pressure. There is a Alz. group here once a month, but I just can't seem to ever get to it!! And the Parkinsons group is too far away. Plus I think I need more help than that. Thank God I practice yoga and meditation- I would of never made it this far!! I have to really make an effort to do what's best for me, and not just always focus on my Dad.

Hi, Bev,

Sorry your situation is such a downer, BUT, at the office of my husband's neurologist there were lists of resources in our town. I immediately signed up with them, a social worker contacted me, have been to one lecture on dealing with caregivers'anger management and will be attending another on frustration soon.

No matter how abusive and horrible your mother was in the past, it is no longer she who is so abusive and negative; it is the disease. That is what I tell myself every day regarding my once very passive, always sweet-tempered, loving husband who has now become very argumentative about EVERYTHING, forgetful and a bit combative, all due to Alzheimer's. We are there thinking of you. Just keep trying to find some sort of job. Post notices everywhere you go. Market yourself and KEEP POSITIVE THOUGHTS IN YOUR MIND. We all care about you.

Hi msBev :-). First thing I am sending you a HUGE hug! A you can tell from the other posts there are many aspects of this disease that are beyond frustrating. I have been taking care of my Mother the last 5 years and she has lived with me & my husband for the last year. I have four other brothers and sisters and the sister that lives furthest away is the one who has given the most support. The others didn't become involved until after my Mom almost died this past May. that was a wakeup call for them. They have acknowledged they were acting like I was an only child when I wasn't. I don't know what to tell you-I would encourage you to have family meetings to discuss her care. Also work on your family to get them to come stay with her and give you a break and don't settle for less than an overnight. Once they have experienced what all is involved in her care you may have more cooperation. My older sister now says if they can't do the respite themselves hey should hire someone in their place. Good luck!!

Everyone, wow, you are all such great people to reach out as you have and for taking care of your parents with love, and I hear it, frustration! LOL Bev, I have been to Alanon - family history of alcohol abuse - and they suggest you attend 6 meetings before you decide whether it is for you or not. So, maybe 6 meetings of the support group before you decide if it is a fit? It is just a suggestion. There's another saying in Alanon - take what you like and leave the rest. That applies to so many things in life, including suggestions on these posts. Also, if your mom is not mobile I do believe you can receive home help. Pls, check out services with the local aging agency. Also, have tried the benefitscheckup tool that I found on this Web site? http://www.caring.com/calculators/benefits-check You might be surprised at what's available. I found out that I might be able to have my mom's air conditioner fixed, it works but barely (I don't have the money to properly repair it) and I might be able to get a landline phone for her. I canceled the landline to combine phones on a family cell phone plan, much cheaper, but my mom hates the cell and doesn't get great reception in her apartment. So right off the bat the 15 minutes I spent filling out the forms was very helpful. Whether is pans out is another thing but it is a start. Also, check out your local library for programs for you. Mine has book clubs, Tai Chi and resume writing classes, all for free. Plus Internet access. The local park also has yoga and water aerobics for free. Finding the time for it is another thing but knowing it is there is the first step for me. Big hugs.

I really appreciate all the helpful ideas everyone has. Living in a region where most of the economy is based upon the 'snowbirds' who flock here yearly, this time of year thru the summer finds most activities few and far between. I understand that come Winter that will change and help me to find more activites.

I am active in my church, volunteering and attending helpful groups and meetings. I did live many friends behind so loneliness can happen, but there is a time and place for everything, and those types of friendships will be rebuilt as time goes on.

I know God has a plan that is unfolding and trust in the provision coming my way and to come.

I am grateful for all of you, it's been quite amazing to read the responses and see how many others have the heart to do what I'm doing...congratulations to all of us for being faithful caregivers!

Bev my email is Improveliferlb@aol.com

Good Luck, Rhonda

PS I will give you a lot of information on what's available if you are interested.

Hi, Bev,

Your situation is so similar to mine. I was retired, but still working part-time until last December when I saw that my mom just could not manage on her own any longer. Please try to cut yourself some slack. You're doing very well. My mom talks very little any more, mostly just directions, such as "Shut the door" and "Turn off the car," things that anyone would know to do, but she doesn't have enough brain cells left to realize that. I'm impressed with how you've gotten involved and the help you've sought out for yourself. Have you tried yoga? I don't do it myself, but my sister, who just went through a divorce, says it really helps her. Hang in there and know you're not alone. Judy

Good luck to you Bev. You sound like one very tough woman and a very kind one to look after your mother as you do. Great work. Caregiving can be a very frustrating business. I liked the advice of LauraL. I would really try to find ways to help pay for your mother's caregiving, even a part time payed caregiver could really give you a break and some time to relax and think about yourself some. I work on a caregiving blog as we are working on a series on PAYING FOR HOME CARE. If you are interested check it out: http://www.rightathome.net/seniorhomecare/.

As far as caregiver stress. That is really tough and it can beat you up. I know it is tough, but you have got to take time for yourself, even if it is just for walks or yoya or something.

Good luck to you and God Bless, Bill

Hi Bev, I too am a caregiver for both parents who live with us. I am able to work FT from home so it's not as overwhelming as it could be. My mother recently suffered a stroke and has a moderate degree of dementia. We have attended a few workshops thru our local hospice and have learned so much that makes it easier to cope with memory loss. They had one recently specifically on dementia - well worth your time to attend. Also a huge help was the book "The 36 Hour Day" loaned to us by hospice. My dad has cancer but most days does ok without a lot of help. Find a support group to get some suggestions and even just to vent on a bad day. It makes all the difference in the world when you feel unable to go on. Best of luck to you.

I don't know the protocol of using this website since I am a care receiver instead of a caregiver but I want to be sure I do everything i can to stay of top of the problems my family and myself face in the future (yes, yes, I have always been a know everything, controlling person ((also negative))! I have been fighting the negative attitudes problem daily and found a couple of things that really help. The main thing is what I'm sure you're already doing and that is to pray but also I concentrate on reading daily from books that help especially Joyce Meyers "The Seven Things That Steal Your Joy" and reading over 2 Cor, Chap 13. May have messed up the book title since I loaned it to someone. When I find myself thinking negatively or feeling I don't do enough for others and even hurt them with my attitudes, I try to remember that worry, guilt and "what if's" come from the Devil. We are told to trust and God WANTs us to be joyful and happy. I will be praying for you.

Jorie13...reading your post just warmed my heart so much. You are blessed because you are taking the best route to help yourself and your loved ones by using His wisdom and being pro-active thru this time. I am very proud of you.

Thank you for the book recommendation. I will need to look into that one. Joyce Myers is a wonderful teacher. And I agree, prayer the most important element. I have just recently started praying WITH my mother...(that is a victory in itself!) and I am going to make it a daily event in the mornings for sure. It's helped both her and I tremendously.

Thanks for you're prayers.

The 36-Hour Day is fabulous! I have read it and will probably read it over and over again. It helps to make things a bit simpler and there is a lot of excellent information in it. This is a "must read."