I never realized the stress the caregiving puts on the person until now.

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I never realized the stress the caregiving puts on the person until now.

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I am caring for my elderly mother in her home. I came to Massachusetts leaving my home in Virginia where I have been living for almost 30 years. I also have a brother who is diagnosed paranoid/schizophrenic who is now 49 years old. I am the only daughter with three brothers, one of whom passed away last year, one who lives in another state, and the mentally ill one who lives here in Massachusetts. Although he does not live here with me and our Mom, he lives close enough so that he is here every single day. Needless to say I am having severe stress issues as there is also a lot of history between me and my mother ~most of it bad. I have been here for 9 months and am ready to put her in a facility somewhere and go back to Virginia. I just need someone to talk to. Need support. My husband is in Virginia along with two of our grown children. I am 61 and have various health issues of my own, but am unable to take care of myself due to the needs of my mother. The stress is unreal.

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K kborey Apr 2010 · Answer 1 · 2010-04-28T22:20:13.000-0400

You are all such beautiful compassionate people. My heart goes out to you. If your elder can afford an attorney this would be a good thing - find one who specializes in elder law. Also, applying for guardianship is always an option. If hiring an attorney is not affordable, you can check with elderlaw within your elder's county, or state. County Commission on Aging can direct you to legal counseling, typically the first 1/2 hour is free so have your questions listed on a piece of paper and be ready to briefly state your utmost concerns. Another option is for your elder to make a call personally (she might get continual free legal counsel) to your state's elder law office - usually this office is in your state's capital as it is within state government departments. County or local Senior Citizen centers, organizations, or groups will be able to give you good pointers. You could consider having your elder appoint a third-party power of attorney. Your elder's county Department of Human Services will have a social worker who could help point you in the right direction with other departments, offices, organizations etc. There is medicaid for those who qualify but each state has its own laws (in addition to federal laws) and your elder might or might not have to already be living in a nursing home before being accepted by Medicaid. Caring for elderly loved ones is all-consuming. I have learned that unconditional love never fails. Always try to be kind. Always remember to try your best to give your elderly loved ones 'happy feelings'.
Good luck and multitude of blessings.

S smdbrown Apr 2010 · Answer 2 · 2010-04-28T22:08:48.000-0400

Thank you. I have started reading your blog. It is very good. I, too, have a blog but it is not about my experiences taking care of my mother. I have a journal in my documents folder for that, but I always felt my writings were a bit too personal to put on a blog for all the world to see. There is a lot of stuff that I just do not feel comfortable writing about for public consumption until after my mother is gone. Anyway, I will be reading your blog. It looks really good. Thanks for letting me know. And I will make it a point to come here whenever I am feeling overwhelmed.

I also check in to see if there are any questions I can help answer. I worked for ten years in nursing homes taking care of the elderly.

R ruthcapers Apr 2010 · Answer 3 · 2010-04-28T21:19:41.000-0400

Hi, I completely understand your feelings. Please check out my blog about caregiver stress. It is urgent that you take care of yourself. I also had life issues with my mother and in my case some of it has resolved for me in the last 6 years of taking care of her. But that may be unusual. Luckily my mother is very sweet and grateful, unlike some of the stories I read. It can't be her life vs. your life. You will lose. You've got to value and respect your own life. Your brother sounds like a good resource My brother lives 3 blocks away and comes over about 1 time a month. He can't face it.

C cowgirl Apr 2010 · Answer 4 · 2010-04-28T20:03:10.000-0400

I share the stress with you my friend, I am taking care of my mom who is 87. I am the youngest of 3 children and live the closest to mom. My brother has health issues of his own, and my sister is taking care of her husband in a wheel chair. I only have 1 daughter who is now 21 and she is off living her own life. working and doesn't live close enough for relief. I am 52 yrs old. recently lost my job on X-mas eve this past yr when I told my boss just 3 days prior that I may need to take more time off cuz mom was sick. I found this website and although I am not well aquainted with it yet, I see they have much to offer. so just stay here and check it out. It is helping me cope alot and understand alot of things. I still have a very uncertain rd ahead as I stuggle with taking care of 2 homes with large yards to be mowed. cleaning for both and taking care of mom inbetween. Somedays I just want to cry. Be thankful for anyone in your life at all to talk to. I live in the country and have very little outside contacts. I am now telling myself that it is very imparitive to take care of yourself.Its very important to keep a postive attitude. (I get angry alot somedays), But I am trying. Just remember, these loved ones that we take care of, well this is the most precious time spent with them. Not always pleasant. But someday we will be missing them alot. I am not a religious person, but I do pray to God when I feel I don't have enough energy to go on. and believe me I feel all things will work out someday. These are just the days we got to go through.....Hugs from Me!!!

S smdbrown Apr 2010 · Answer 5 · 2010-04-27T20:38:40.000-0400

naheaton:

That would be the best thing but we have to think about our other brother who is mentally ill. Our mother is his whole life and I think it would be extremely important for him to at least "think" he is having a direct part in our mother's care. Perception is everything in this case and with my mother in a facility here and me gone it would give him the "perception" of power in her care. He would be the one looking in on her every day and as my other brother said:

"for her to be alive and out of the state probably would not be fair to him. As long as she is alive even when she is in a nursing home he would visit her every day. That would give him purpose and probably some stability. I want to believe that when she dies, he will feel as though he did his part in providing her care, and there will be a sense of completion as he lives the rest of his life alone in Boston."

I thought this was awesome wisdom.

When I put her in a home then I will be able to return home to my husband. My children are all grown and out of the house. So it is just me and him. She will be safe and my younger brother will no longer feel that his space has been invaded or that his position with our mother has been usurped. Even though he is 49 and is not retarded, emotionally he is extremely possessive of our mother and I have found out that he also can be very jealous. I believe it has to do with the paranoia associated with his illness.

S smdbrown Apr 2010 · Answer 6 · 2010-04-27T20:26:27.000-0400

You all are so great. I thank God for you all and I thank God just because He is God! I most always frame my days in prayer ~first thing in the morning, last thing at night. And most often all day long. I read this quote on a friend's facebook page: "Yes and no are the two most important words that you will ever say. These are the two words that determine your destiny in life." - John Mason. I guess what got me is that I am taking care of the first person who robbed me of the power of "yes" "no", and "stop". My mother did not sexually abuse me, but physical abuse started at age 10, and then there was the rape at age 11. I always blamed that person for taking the power of "NO!" and "STOP!" away from me, but as I have been taking care of my Mom, I realize that it was her. I always laid the blame for the rape at her feet. But all of that is so much old history. The problem comes in with my emotions not realizing that it is old history. Then when I have people like my mentally ill brother come in and encroach on my territory and just take things without asking. Nevertheless, when it gets hard I go to God in prayer and I ask him according to Hebrews 4 to please give me mercy and grace to help me because I am in need. Interestingly, the feelings of being overwhelmed, or that deep, deep anger that feels like rolling thunder goes away.

I am so glad I found this site. I can vent here. And if there is a different "forum" that I should be on to vent or whatever pelase let me know.

Stacey (Brown)

N NancyH Apr 2010 · Answer 7 · 2010-04-27T20:25:30.000-0400

smdbrown, I vote for your brother's idea of having your mother close to him. Your first priority should be your husband, then kids. It would be awful, if after your mother dies, to find out your own family has fallen apart in your absence. Not worth it in my opinion. As long as your mother is safe and being taken care of , then it's all good.

B bobbie321 Apr 2010 · Answer 8 · 2010-04-27T16:41:39.000-0400

wow robin and brown, please accept our condolences for the loss of your brothers. ow.

The caregivers on this site are wonderful. they have saved my bacon quite a few times and I wish I had found this 5 years ago when I first started caregiving for my mom.

No one but those of us who have walked this walk have any clue what we are going through. Outsiders, and yes, even if you are related but your relatives are not pulling even weight they are outsiders too, want to trivialize what we deal with and treat us badly. sux.

My mom and I had our moments and we were fortunate enough to have worked it all out before she got too far away. Here's a hopeful thought for you brown, because it really helps to make it easier to manage. Mom and I watched Dr. Phil every day and lots of times things would come up that we had experienced with me growning up and etc etc and we both learned a lot and mom got off of my case eventually. Found out I wasn't so bad after all.

In the beginning mom was combative and mean and I told her that she could have a choice: I would tell her exactly what I knew and learned about dementia or I would bs her to shut her up. She chose the truth and we were able to handle things a lot easier after she accepted her situation. (18 months)

Blessings on you for being so generous with your brother and I think that the idea you have for him and your mom is brilliant.

When you find yourself stuck at home, get on this site and poke around. everybody here knows what BRB MOP means.

Be right back, mom on pot.......

Welcome welcome and use the site!! gripe vent whine kvetch and listen to the caregivers and go home to your family.

when I thought that my head was going to explode because I was living the life of a 90 demented lady for 5.5 years, this is the tool I used to get it right.
my mom is late stage dementia and she is in a beautiful facility, on my side of the country, where she is loved and well taken care of. It was hard hard hard to do that but I had to or I was going to die. That simple.

Good luck and you can do this! Deep Breathing!! Bourbon!!!

lovbob

R robinbird Apr 2010 · Answer 9 · 2010-04-27T15:46:35.000-0400

all of us need someone to talk to thank god for this web site, heath care is so hard, and i am realizing i need to make time for me. i also take care of my mom and brother 52 years old and never appricated for it. i let my brother talk to me like a dog and i just say hes mental this was a mistake i lost my 43 year old brother january 2009 he helped me alot with them i believe i lost my heart when he died but do what you have to and dont wear yourself out you got to think of you as well believe me my health has gottin worse with all the stress and no one is seeing this but my husband and myself and im only 46. god bless you and thank god for giving your family a sweet loving person like you

L linda09 Apr 2010 · Answer 10 · 2010-04-26T16:24:42.000-0400

i feel for you . i too was stayin in florida to take care of pa . he loves to travel so we was going from fla to indiana . my husband got tired of it , it was killin him when dad said hes ready to go back to fla . part of my husband was tearin his heart when i told him we re goingback to fla .
well when we got to fla i missed my husband so much and i told dad that he has to make up his mind , im not drivin back and forth cuz i have family at home in indiana and when i go back im staying home .
his choice was to stay in any nursing home or stay with me in indiana .
my sister said she would stay with him in fla durin winter time . well he fell and got hurt and landed in hospital and then to rehab , he decided he is better off to stay with me in indiana . so now he is here with me .
gotta tell them theres 2 choices , nursing home or come and stay at my home with my family !
my whole family is so happy to have me home for good . :-)

S smdbrown Apr 2010 · Answer 11 · 2010-04-26T13:48:05.000-0400

Thank you both for your responses. Moving her to Virginia with me won't work. I tried as along ago as 10-12 years ago to get my mother to move to VA and she refused saying she would miss her friends too much. Well, now most of her friends are in nursing homes themselves in various parts of the country or have passed away. I have discussed this with my brother and we both agreed that it would probably be too much for her. But even more than that is my brother who is mentally ill. She is his whole life. He probably would not do well outside of his environment and he would have no one in VA but me. Here he has other family that he can at least get around to visit. We have public transportation here where there is none at all where I live. My brother in NJ said something that made tremendous sense to me and was loaded with wisdom. He said that if our mother is in a facility here he would be able to visit her every day, or at the very least several times a week, he will feel that he is involved with her care. He will have the 'perception' that he is in control of things and the one who is caring for her. This will give him a sense of purpose and a sense of completion after she is gone. He will feel that he did his best for her, which is something that will become very important for him when that time comes. He came to this conclusion after he and his wife discussed the possibility and the pros and cons of bringing my mother down there and taking care of her there. And as far as my younger brother going to NJ, that cannot happen for any longer than a visit.

I just really have no immediate help. I have no one to stay with her while I go out and do things. I can go out between 1 and 4 in the afternoons. I do not like to go out until after lunch, when she is downstairs for the day.

Anyway, thanks again for your responses.

T toadballet1 Apr 2010 · Answer 12 · 2010-04-26T13:26:59.000-0400

That's why they call us the "sandwich" generation. We are still working at your jobs, and/or raising children AND caring for our parents. And this additional job usually comes with very little support or help from either family or the government.
Is it possible to find a good facility for your Mom near where you live in Virginia? Or can she live in a senior apartment complex? (these are gov. subsidized and cheaper...the ones here are very nice.) That way you can keep an eye on Mom, make sure she is getting the appropriate care, and still have your life. Can your brother pitch in to help your other brother? It wouldn't hurt to ask. Sometimes if we take everything on our own shoulders, others will be happy to let us do it.
If, as you say, you do not have a good relationship with your Mom, then living with her will just escalate the resentment.
If it is any consolation, the first few months of caregiving are the most stressful. I came to this site thinking that I was alone in my experiences. I felt that I was in a constant "haze" and had few others to depend on. The folks here literally saved my sanity!
I now have things more under control. I began by not treating my Mom as a "guest" - she lives nearby now and I deal with her needs first and her wants second. I was spoiling her. I also make time for my family that is separate from Mom. You need to have that alone time.
In the meantime, try doing anything that gives you an escape: reading, bubble baths, music (with earphones), hobbies, support groups.
Good luck...let us know how it is going.
Lilli

D Despr8caregiver Apr 2010 · Answer 13 · 2010-04-26T10:58:27.000-0400

You have taken on a big job! It is so stressful to be going through all of this and the worry about your health and your family in Virginia must seem unbearable. I was a ling distance caregiver for my mother who lived in NC while I lived in Idaho. She was well cared for in a nursing home so I didn't have many of the worries of her day to day welfare. I eventually moved her to Idaho and that arrangement worked quite well. I could see here every day and we had a much better relationship up until her death last Sept.
You mentioned bad history with your mom but maybe you could consider moving her closer to you or your brother into a nice assisted living or skilled care facility. It is time to think about yourself and what would make it easier for you to ensure your mother is safe and that your health is attended to. Dealing with the distance doesn't have to be the only option.

I never realized the stress the caregiving puts on the person until now.

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