I just joined this site and wished I had known about it sooner.  I was the caregiver for my bedridden mother for four and a half years and let me tell you it wasn't easy.  I quit my job to keep her in the home.  I am so blessed to have been able to do this for her.  She passed away in April of this year.

Even though she had nursing care and ended up on Hospice, there was absolutely no help for me, the caregiver.  With all the social workers within the nursing services, they were not there to assist me with my concerns and stresses.  Mother never spoke to them about her concerns because she had none, she was well cared for.  

I just want to remind everyone who cares for their elderly parents, to take care of their needs also.  How and where to seek help is nowhere to be found unless you can afford to see a counselor.  This is why I depended on "prayer."  When you have no one on earth to help, look to the heavens.  The Lord is always there and does listen.

God bless  

Hi Vicky,

I'm glad you found us!  I sure hope you stick around.  There are lots of folks here who would love to hear your experiences and advice you have learned from the care you provided for your mom.

Hey there,

Glad to see this worked.  My mother's death experience is what I will remember more than any of the bad stuff.  I witnessed mother's struggle with thinking she would not go to heaven.  This was on her mind just before she took a turn for the worse.  Thinking of this brought her to tears many times. 

I asked her why she thought she would not go to heaven.  Her response was "because of all the horrible things I did in the past."  I told her all she had to do was "ask for forgiveness and it would be done."  On her last day of life, the beavement coordinator came over.  I explained to her how mother felt about going to heaven.  This precious lady lend over my mother and told her "Jesus loves you for the Bible tells me so."  Tears appeared in mother's eyes and she wiped them away and comforted her.  We then held hands (holding mother's hands in ours) and she said a prayer for mother.

It was immediate forgiveness because my mother's breathing slowed down to a calm steady pace.  She was at peace and it showed.  My three children were holding her hands and comforting her when she took her last breath.  The sun came out and a glow went over mother. 

This is the memory I will have forever of my mother.  Yes, the years were horrible at times, but that is no longer on my mind.  For every thing that happened, all has been forgiven.

Thank you for being there and listening.

God bless

Hi Vicki,

          Glad your here sharing your experences with all of us . 4 and a half years is a long time to care for a loved one, who is ill. Iit soundes like you got a lot back from your experiences . My Mom died about 10 years ago .I was the only one with her in the hospital and got a priest to give her her last rights when her breathing was labored. She died an hour later . It is hard but taking care of love ones can also be very rewarding . As a nurse I think God just wanted me to continue on this path after I decided to do  other things  a few years ago.. Then My husband was diagnosed with EOAD early onset Alzheimer's disease at 58.  There was and is a plan I told a friend . I can't certainly say I am enjoying watching the man I have been married to for over 40 years turn into a child but I would not have it anyother way but me taking care of him . We take it one day at a time and we are doing fine . Wish you well and welcome to this site for solice. and consolation .

Love Torn 

Wow, you are truly a blessing to your family.  I understand how you must feel at times with having your husband going through his illness.  I am so thankful my mother had her mind up to the end.  She knew where she was most of the time.  There were short periods where she was confused, but not many. 

She was a nurse aide for many years and knew she did not want to go into a home.  I quit my job so she could be with us full time.  By us I mean me and my son.  My sister lives with us as well, but she totally ignored mother and still ignores me and my son.  So, in truth I also care for a family member who is a loner.  That to me was the worse part of caring for mother.  Knowing I should have help from my sister, but had none.

I attend a university here and have been doing my best to get a degree, even at my age.  Mother use to tell me not to go because she didn't like being alone.  My son works two jobs and isn't home much.  What time he was home he helped me more than anyone.  My mother and son were very very close.  In fact, he asked us to move in so mother could watch the birds from her bed.  Her bed was in the living room by the back patio doors.  She was the center of everything.

Well, now that she is no longer in the living I still am in the habit of being quiet in the early mornings.  Habits are the hardest thing to break.

I want to thank you for being there.  And willing to listen to me ramble on.

Take care and God bless

I'm new to this site, I'm hoping to be able to find people in the same boat as me, and it looks like I'm in the right place. My Dad is 80 years old, with the onset of dementia - he gets confused easily and each day I lose a little more of the Dad I've known all my life. It's difficult to watch. His mother passed away at 99 years old, had Sundowner's Syndrome and eventually Alzheimer's, so I know what's coming. Just being able to speak about it and get it out from inside will be helpful.

cskten,

               Welcome . I am calling myself Love torn., because that's how my heart feels. To see your love one lose bits and piecies  of himself every day is tearng my heart apart. I try to keep up beat and both of us as busy as possible and that seems to help. As active as he can possibly be for as long as possible to keep his Quality of life and his self esteme I think is important . I do find he is failing fast with his personality and behaviors which is so unlike the person he used to be . Hang in there . Being able to talk to other people and caregivers going through the same thing does seem to help .Best wishes to you and your Dad.   Love Torn

confused my husband just turned 53, he was diagnosed in june with rt kidney cancer then rt hip, now pelvic cancer, i try to not cry arond him or act any different, take alot of showers! what am i to expect i get so mad at the doc they dont really say much, it is not cureble, 1 patient has lived 8 yrs, no chemo, maybe radiation, not takin kidney out( even though that is where it all started] REASON INFECTION, DONT WANT TO CAUSE HIM MORE PAIN, my god docs can i just get a straight answer?  HOW LONG DO WE REALLY HAVE ? i promised him to never hospitilize him, and i wont but what am i facin??i love him soo much! he even still gets p and goes to work everyday, rides his motorcycle everyday, we went to the beach this weekend with 3 of or daughters and 4 grandkids, u cold tell he was hurtin but wold not leave untill everybody was ready,some body tell me HOW BAD IS IT GOIN TO GET??AND IF ANYBODY NOS ANYTHING ABOT BONE CANCER PLEASE TELL ME I AM GETTIN DESPERATE, I AM A RECOVERING ALCHOHOLIC,AND IT IS GETTIN TOUGHER EVERY DAY, JUST NOT KNOWIN ANYTHING ABOT THIS  THANK U SORRY SO LONG!

hello kickmetoo,

 Welcome. You  have found a great group of caring people.  Wasn't sure if you knew there is a cancer support site here which you might find helpful.  They might be able to help answer some of your questions.  It sounds like your husband is a tough cookie.  He is lucky to have you hanging in there with him.  Sometimes you need to keep asking questions to doctors to get the answers, if not, then perhaps  it is time to find a different one.  Family and friends are always helpful during these tough times. They are very supportive and helpful in many ways.   I work with a lady with alzheimers and bladder cancer.  She is also a tough cookie but very sweet and cheerful despite her conditions.  I will keep you in my prayers.

Hello!

This is great to have such support topic to help anyone who has, will be or could be a caretaker of a parent. I wish I had this to start me off............It started with me at 14 yrs. ago and single being a caretaker of my mother who since 1994 has had 3 TIA's (mini-strokes), dementia and depression. She and my father had lived with me. My father never had a stomache for helping others........Then 4 years ago my father was told he had brain cancer and not much long to live.......It was again I was taking care of my mother and now dealing with my father and his cancer. He only lived 6 weeks after being told that he had cancer. There's this "snap to it" mode that you go into when faced with caretaking a parent. And with me having no children and single........GOD gave me the strength to "snap to it"!!! I had no time for grieving because I had to stay strong for BOTH my parents and to take care of their needs!!!  The feeling just is so unexplainable that again, GOD gives it to you!!! And I ...............By the way...........My father excepted Jesus Christ as his saviour when he was lying in bed and I stood their besides him to pray and witnessed his acceptance to Christ! That was the BEST gift my father had gave me by taking care of him until he past to be with the LORD!!! Thank you Dad...............I love and miss you!!!!

You are all dealing with so very much . My advice is to just try to take 1 day at a time . Deal with what you can 1 day at a time an so on. Yes, prepare for the future and get all your ducks in a role as they say , Financial, health care Proxcy, power of attorney etc. but don't sweat the small stuff. Like-  The door bell that doesn't work, or a vacuum cleaner etc.  Let the leaves on your lawn pile up . What will happen ? They might blow over on your neighbors or turn to mulch . Rain or snow days . Who cares , play a game watch a movie .  Go with the flow and you'll be better for it .Take care of yourself and your love one. who you are caring for . That is the most important thing now in your life . Yes, GO WITH THE FLOW .Everyday is different and challenging as I know . Love Torn

Thank you "love torn"...............I do try to take one day at a time, it's just in that "one day" the seconds, minutes and hours are difficult at times. However, I do practice what I preach and rely on the LORD..............I am NOT one of those big time church goer holyer than thou kind of  people, just have a strong Christian belief in GOD......

Hi Everyone!!  I am also new to this site, but I am so grateful to have found it!  I have been "lurking" here for a while and everyone is so supportive.  I am caring for my mom and dad who are 80 and 84.  They are still somewhat independent in their home right now with my help, however, mom is getting closer to having to have dialysis because she has chronic renal railure.  Dad has the beginnings of dementia and pretty severe diabetes.  I also run their business now which is a stress for mom because she worries about it a lot along with her failing kidneys. I also have my 2 kids who are 10 and 15.  Luckily, my husband is supportive so that helps.  My sister and brother live in other cities and don't help out much.  It is so sad to see your mom and dad slowly fail!  I was just wondering if there is anyone  here with experience with dialysis?  There might have been other posts about dialysis and the elderly, but I didn't see any.  Thanks in advance for any advice and my thoughts and prayers go out to all of you!!  Take care everyone!

Julie

To all above,

1.                             Just got back from my husband's Neruologist and there is some med changes which I hope will help with him being calmer and maybe even  taking a SHOWER 1 X A WEEK .  IT HAS BEEN 2 . HE SAID AS I SAID THE THOUGHT OF MORE TRAVEL IS out !. I PRAY OFTEN TO MARY MOTHER OF GOD --SHE HAS BEEN HERE FOR ME ALL MY LIFE - AND I FIND SHE TALKS TO THE BIG GUY ON MY BEHALF . --BUT THAT IS JUST ME AND iT DOESN'T MATTER IF people are  Christain ,Jewish, Musliam, or Budish ,
2. CHRISTAIN SCIENTIST or even don't have a relegion . I believe people are caring and loving and SPRITUAL  who ever they call on that is their decision . BUT I believe we all need someone to call on time to time . This is happening to fast for him and I need to pull in all my  forces, RESCORCES , and hope and pray for the best . Best of luck to you all and you are all in my prayers too. _Love Torn

I posted a more narrow topic in the End of Life forum, but I have a lot of other issuesthat I could use some advice on. I'm 22, just graduated from college and have been taking care of my dad (71, with liver cancer for about 10 months). Because of my dad's alcoholism, he's alienated himself and there aren't many other people that are willing to help out in his time of need. I have other siblings, but I am the only one that actually grew up with my dad, and we have the closest relationship. My dad was a particularly difficult person even before the effects of age and sickness, so he can really be a handful. This aside, I know that it is really hard for him to accept help from me because he has always been so independent. I want to respect his independence and keep his spirit as alive as possible, but there are so many times where I want to "make" him do things that he won't.

Incontinence: He almost never makes it to the bathroom without an accident, either on himself or on the floor. He has enlarges prostate and I have talked to his primary care doctor about it, but she didn't have any suggestions. I bought him some depends, but he refuses to wear them. He will occasionally use the hand urinal. This is compounded by the next issue.

Bathing: He won't bathe, at all. I've bought transfer benches, spray hoses, handle bars, all the things that are supposed to help make him feel safer, but he won't do it. We recently got a home health aid but he won't let her bathe him either. He is really filthy, and I've pleaded with him for months, and he's say yes and then changes his mind at the last minute. I have no idea how to address this. I've asked him if he just wants me to help him in and out of the shower, that way his modesty is respected, but he says he can do everything himself.

Eating: He's reverted to a 5 year old's tastes in food: cookies, popcorn, soda, hot dogs, etc. He won't eat anything green, and lately hasn't been eating much at all.

Sleeping/ Apathy/ Depression: He sleeps all day. He's always slept a lot, but would get up and watch tv for a while. Now, he sleeps most of the day, not even waking for meals. He also has very little interaction. I work full time, and am gone most of the day. He was going to a senior center in our area,but complains about being around "all of the old people". He only likes to hang out with my (college aged) friends.

Personal Guilt: Sometimes I'm pretty hard on myself because I can't take care of EVERYTHING, all of the time. It's still a struggle for me to care for someone else when I'm still getting the hang of taking care of myself. Then I feel guilty for not remembering to make him a lunch or for not making him breakfast because I am late for work, etc. I can't fuss at him for not taking his meds because sometime I forget.

I'm not really sure if there's anything you all can do to help me, but I feel better already just getting it out.

Thanks

To Truimage,

                           Only 22 and trying to do all this and work too. Amazing you are. My guess is he just doesn't care about how he looks and how clean he is if he is dying. I remember trying to comb my Dad's hair when I was young and he said I am dying and you are trying to make me llok good -what the Hell do I care he said. No one told me he had Cancer and he was dying . That aside I now can't get my husband to wash or take a shower either and I am a nurse . He has FTD (. Frontaltemporal Dementia ) I got his Dr. to oder a mild fast acting med to calm him but haven't tried it yet --maybe tommorrow .  You could just ask him to sponge bath and set everything up for him . The incontinious is another thing and that will need to be addressed too. Because he certainly needs to clean himself or have help if needed for that . I would Try a male aid if the female aid is not working for him . Hang in there and keep smiling if you can.  Love torn

love torn,

    i just want you to know i truly admire you and feel you will be soooo glad you have done all you have done,  only someone in your position can truly appreciate everything you are going through.  deep down i believe your husband knows what it is you are doing for him and he appreciates it as well, he just isn't able to express it right now.  for the short time i was a caregiver for my lady friend who also had alzheimers, i feel there were times when she was trying to express herself but wasn't able to get the words out she wanted to say, she knew what she wanted to say, it was just "there" in the background, it had to be sooo frustrating for her, but she always was so pleasant and kind and loving.  i really miss her and think about her a lot.  she passed on her love of bird watching to me and i always think of her when i see the birds at the feeders i have.   i, like you, feel you just have to be a kind and loving person to be a good christian and it truly helps to have God to talk to everyday, you just have to keep the faith, even on those tough days when you really get discouraged.  good friends and family help a lot too.  i will keep you in my prayers.

Hello,

I am having problems with coping with my parents.  They are still married 58 years but do not live together.  My daddy hates my Mother.  While my mama loves him and is the only man she has ever been with.  I wish I could find a way to help my mother understand that daddy is not going to come back.  Oh I forgot to mention they live within walking distance of each other.  My mother is 87 years old and daddy is 83.  My mother ask everday (no lie) why did he leave me?  I don't know what to do.  Any advice is welcome!!!

Hello, I just joined this website today and do not even know how to begin. I know that there are so many others with much more difficult issues than I have but I am all alone in the world dealing with the problems that I have been enduring for a long time now, with my daughter (my daughter is fine now, but I can't seem to get out of the anxiety the depression caused from what she put me through for five years, and dealing with it with no emotional support from anyone), mother and mother-in-law. I know I need professional help for myself, but have had no health insurance since I lost my job/career over not being able to deal with what happened with my daughter. And, I definitely don't have the time. No one in my workplace or family understood back then, nor does anyone in my family understand even today, the thing with my daughter emotionally and financially ruined me. I have so many issues at hand that I don't know which one to start with first. I am probably not making a very good first impression, but I am so desperate for someone to help me that at this point in time, it doesn't seem too important to even try to make a good impression. To sum up, I have had, what I now call, my mother-in-law with dementia, incognence "dumped" on me, which I realize is caregiver burnout. But, no one in her family seems to have done any research on dementia, if they did they don't care that I have caregiver burnout as long as they don't have to deal with their own mother! I have my mother, who has a long list of health problems, refusing to seek medical care. (I had the list but can't find it). I have lived with the guilt that it is partly my fault she no longer has a doctor because of a letter I sent him, seaking his help but instead of helping he refused to see her anymore and it caused a rift between my mother and me so bad that she and I didn't speak for over a year. I felt so much guilt!!!! Am I making any since to anyone? Anyway, I was searching to see if there is anyway that I can legally make my mother get medical treatment. Right now at this moment, my mothers health is my main concern. I finally got enough nerve to go see my mother again, but she still blames me for her not having a doctor and is being stubborn about trying to find another. I'm trying not to let the guilt get a hold of me again. Before I wrote the "infamous letter", I was trying to get her to seak specialists or have her doctor refer her but she was refusing that kind of treatment and just wanted the pills that caused the letter to be written in the first place. I don't think this is the forum to go into detail, please guide or help if you think you can. Thank you.

dear xaxa,

sounds like you need a good friend to "listen" and a shoulder to lean on. as far as your mother-in-law's dementia, i was a caregiver for an 80 yr old lady with alzheimers, we had our share of good and bad times. but my involvement was parttime. her dgtr was an admirable lady, she did have a supportive husb and dgtr living at hm but she took on the main brunt of it. she had a fulltime job as well and i know she had many restless and sleepless nites but she hung in there, loved her mother dearly. there is so much info on the internet about the disease it is well worth taking the time to search. you might pray for her children to step up to the plate so to speak. it is sad the disease seems to take away the loved one you once knew. as for your mom, try not to feel too guilty about the "dr thing". i worked for a dr for many yrs before becoming a caregiver. i believe i have never met anyone or "class" of people more arrogant than them. almost thirty yrs working for them and they really believe their answer is the only one, they do not appreciate anyone questioning their care or wanting a 2nd opinion. since your mom doesn't want to "help" herself right now, sadly there isn't much you can do at this point. it is really up to her. maybe there is someone else in the family that might reason with her or a good friend of hers? just know that there are many kind people who share this website and there are people out there who can sympathize with you, you are not alone. hang in there, prayers seem to help me with troubles.

Thank you star. I really needed this website a long time ago. I have received two hugs and I feel a frog developing in my throat, right now. I keep telling myself not to cry but it's a cry of relief to have people that understand, finally, what I am going through. Everyone is always asking about my mother-in-law. I just want to scream, SHE'S FINE, especially when I can barely lift my legs just to get dressed (back pain) from cleaning up after her all day (she wears depends) I know this sounds selfish, but it sure does help me to know that I matter too. The anger I feel is not like me. My grandson used to call me the female version of Gandhi. lol I feel for my mother-in-law and know that it is not her fault but I needed time to heal myself and didn't receive it, and I can't help but feel used and abused. I don't like speaking ill of anyone and this is the first time I have spoken of my situation without people trying to lay all their guilt on me just so I'll keep doing what they don't want to do, and that just makes my blood boil. I have had to start standing up to my husband, because up until his mother got worse, when I was dealing with "trying to save my daughter" (that's what I called it, she is my daughter from a former marriage, she is doing great now and I am so very proud of how she pulled herself out of pure evil)he called me weak minded etc...and he and I had a terrible time. But he is helping some now, but he is at work most of the time. I don't feel so alone anymore. The letter to the doctor was to let my mothers' doctor know about the provigil and the side affects that it was causing, a plea for help from him. I don't know what happened after I sent the letter. She didn't want me to talk to her doctor last year. I told her doctor in the letter, I was taking a chance that she wouldn't speak to me again. I did research on the provigil before sending the letter to him and didn't like what I read about it and how it was doing her. Then my mother-in-laws dementia gets worse, I have done a lot of research on that subject also, but without the others knowing the extent of this disease, it didn't do much good for myself. I have tried to talk to them but they just stopped coming around. Seven days a week is a bit much for one person. I run myself ragged trying to take care of everything. I'm rambling. Thank you again. I am going to give my mother-in-laws insurance a call to see if I can get help from them. I read somewhere that a person can make stress work for them and find solutions to problems, calling it resilience. I'm trying that method, I just need to stay strong. And, I did sign me up for health insurance the other day, finally. :) I do a lot of research on all kinds of subjects. I'm so glad I found you guys! Any way I can help/listen/whatever.....let me know. Sorry so long.

xaxa, You are not alone . I haven't wanted to respond to these messages for along time but I feel you need a hug. I need a Hug too. My husband just turned 62 and is dealing with FTD which is a faster type of Dementia and Genetic. He has already started to be incontinent of urine and doesn;t wipe etc. No problem I just have to be on top of it all and I am . He is my joy and my life . I find it a privilege To take care of him and I love him very much . I do find however that I miss his oldself and our old life . I sometimes feel I don't have a life , Then I try to remember and live one day at a time . Take care and good luck to you .Love torn.

dear xaxa, you need to hang in there and pray things get better. at least you know there are other people out there who do care. sadly, today dr's seem to hand out the drugs so easily and don't appreciate anyone questioning whether it will harm more than hurt your loved ones. so many side effects and seems some drugs only cause you more problems than what you started out with. my father-in-law's dr is the same, i sometimes will go with him to the dr and having spoken my mind once to this dr, he isn't overly happy to see me. that doesn't bother me, i am concerned for my father--in-law's health not the dr's conscience or happiness. sometimes if the person you are caring for, even though related, has a lower income, you can be paid to be the caregiver for that person, perhaps that is something to ck into. one could hope the other siblings have a change of heart and help out once in a while which would surely relieve your burden.