Any broke 24/7 dementia and ALS caretakers with useless sibling support networks feel like they are going insane as the years go by?

Look up C-PTSD (Chronic Post Traumatic Stress Disorder). It's a thing. People can have it from growing up in a dysfunctional home, or from being caretakers to the chronically ill. My husband has it from both ends. You need to find ways to relieve yourself of the caregiving role 24/7 by enlisting help. If you don't have family that will help, enlist strangers. Look for help from whomever you can get it. Go to your county department of aging (if you live in the U.S.) and see what services might be available. Respite care, home health aides, even nursing home care if necessary. Depending on finances, you can pay for help, or get them on Medicaid. Many states offer home health services through Medicaid.

If it makes you feel too guilty to turn to institutionalized care, remember that it can be done temporarily in some instances, so you can get a break.

You yourself, as much as anyone else in the entire universe, deserve you own love and affection.

Must be world wide as I live in Ireland !

at Katie222: You are SOO right!!

I feel this way too, cannot believe what has happened to my poor Mom and what we have had to go through. The most disappointing part, besides the suffering, is the many losers and people that are full of talk, but can't do their jobs properly. That is why Mom is here with me and not in a NH. I often wonder how I will be after this horrible time. I have lost faith in humanity with the way seniors and their families are treated.

When the suffering and funeral are over it's so hard to stop the flash backs. I feel as if I've been in a concentration camp for 4 years and have witnessed some of the worst human suffering. I hope in time my mind is still and the holes in my night are filled.

I am so grateful for all of you who have been so open and honest about your side of caregiving. We want to keep our loved ones home and well cared for, and too often we are the only ones to step up to the plate. Around here, unless you are a millionaire, adequate care is not available in assisted living or nursing homes. If one is incontinent the standard is one change every eight hours. So we plug along, feeling all alone. It is good to know that we are not alone. Just keep looking for some glimpses of joy and praying for GOD's grace. I send each of you a warm, sincere hug.

Those that are the caregivers, sadly, get treated the worst by the elder. We are the ones that tell them what they have to do.

Taking care of my dad my dad as he gets sicker, more and more agitated and confused had been exhausting and emotionally draining to say the least. He takes his frustrations out on me because he's hurting and scared. This board taught me so much that has helped me to put away some fears and gain a deeper understanding of what he's going through. He feels safe when I'm there and comforted by the fact that I will be with him through everything. Despite the hardships of caring for him (which have been many) it's one of the greatest honors in my life be there for my dad during this time when he needs me the most.

Caregiving is IMMENSELY difficult, but it will stop one day and I think you can figure out why.

My responsibility in caring for my two friends who have dementia seems easy compared to what others who have written have gone through. I am their POA for their finances and health care, had end-of-life decisions arranged at the same time I got the POA responsibility. There are no siblings involved, no children, just me and two others as second and third POAs. No family conflicts, resentments, rivalries to deal with. When Beth needed to start hospice, the care she received seem miraculous to me. If she needed anything, it was gotten to her within an hour or two. She passed on this morning and her husband of 47 years is beside himself. His dementia impairs his processing and remembering how long she has needed this care and he asks the same questions over and over. We have arranged for 24 hour care from a local care agency we used before they got into assisted living-memory care to be with him for a few days and monitor how he is handling things. I have enough to do to see to the funeral arrangements so the personal care available (for a price, of course) takes a huge load off of my shoulders. There will be insurance money to help pay for this, but the hospice care is provided by medicare, so I don't expect any bills from the extra care she had needed. I will have to sell their condo at some point when I have had time to see to repairs and their belongings, but it doesn't all have to be done in an instant, so I am giving myself permission to take it it small steps. I am retired, so my time is somewhat flexible. Every time I have a question, a good answer has been provided by a knowledgeable person. I have been amazed at this. I would like to think such ideas and answers are not unique to me and should be available to others, too. That doesn't diminish the family dynamic issues raised with this topic, which are far more toxic than anything I have to deal with. My best wishes for good answers to come to others facing such difficult issues. I pray a lot for guidance--the best ideas, the best words to use in dealing with others. I don't know if that is why things have gone well for me, but it certainly may play a role.

Today, I took my husband with Alzheimer's to a shared room in assisted living after about three years with once-a-week home health aide and a few recent weeks of day care.( What I needed was NIGHT CARE. This will be my first night without getting up to help, calm, comfort, jolly him several times a night. This after working to 1AM trying to do the house work I couldn't do in the day time.) His room wasn't ready for him at the facility, although they told me it was, and that the room mate was moving out, so I've spent two days cleaning, moving other people's possessions out of the way, while soothing and reassuring him, etc. Just when I thought I'd wrapped it up, and suggested to him that he should wash his hands after using the bathroom, and use the nail brush I just showed him, while I did the final look-about, I heard him swear that it was a horrible nail brush. Went in to see. He'd been at the other man's sink, mistaken a safety razor for a nail brush, and sliced the tips of two fingers. That was when I wasn't holding it together any longer. Only good thing to be said was that the incident was a distraction from his misery about being separated overnight from me. I don't dare, right now, to even take a look at how I feel. Later....

Yes, I am worn out all the time, feel sometimes like I have no life, I have a wonderful husband that has stood by me and I have not even got to the rough part. Mom is not real bad but is there 24/7. We went out for the first time in a long time and got a motel just to get away, it was for one night and to be honest I was so exhausted that I slept most of the time. Someone posted this on this web site and I actually printed it out and read it quite often, it really helped me get my mind a little clearer. "The only disability I will suffer from my care giving of my partner will be a broken heart. This gift of care giving one you love is that - a last gift. Falling asleep on the couch in between his conscious moments, trying to hold yourself up as you say good bye to a life that was so beautiful and will be no more. this is not for the faint hearted. I am 73 and I WILL complete this work. I pray someone who loves me is with me in the end." I thank the person who posted this not only is it beautiful but It helps me to read it when I get to the point that I feel like I can't go one anymore. I hope it helps you as it has helped me.

I am "an only child and daughter"; my mom is 93 & I have been doing this in my home 11 years; before that I helped out significantly driving back & forth between our home & hers for 15 years; I finally found very good help 18 hours per week at $20 per hour; but man!! No one in the family even offers to "sign up" to help!! Just think 80 million "aging yuppies"!! Man!! No one will sign up for us either!! Thank you all for your answers -- you all wrote from your hearts & you all will help me get through the day!!

Unfortunately all of them. It is important for the caregiver to take some time off, you may wish to consider a Respite stay for you loved one. This is a short term arrangement with an in home care agency or an assisted living community where they take over total care for a period of time. This will allow you to take some time for yourself to do whatever you want. I would suggest you join a ALZ caregivers support group.

newyorker, I fully understand the exhausting, never ending laundry and personal hygiene on top of all the other tasks. It is nearly impossible to be anything but a slave to one that is bed ridden. And the guilt we feel when we want just a a few hours or dare we think even a whole day . And taking the one we are caring for on vacation with us? That's a joke - who do they think we need a vacation from? With that being said, are there any changes that you could make? Can you talk to the dr and start using a catheter? Not the most fun to change but easier than constantly changing linens and giving a bed bath. Thoughts & Prayers . . . good luck.

Hi, at this point I've come to realize they will never help. They are flawed and I cannot change them or awaken a conscious in them. They've gone so far as to tell me what generous people they are, if only I had not called them with an attitude that one time when I was about to lose my mind over mom's care. They are clueless to the stress we caregivers are under. Now in their mind's eye I have given them, on a sliver platter no less, a valid excuse for their lack of involvement. I'll never be close with them again and I refuse to invest anymore of my energy on a worthless cause. Not wishing it on them but the lessons they are teaching their young adult children does not bode well for them when they themselves become aged parents. Thanks for letting me vent.

I'm with you. My daughter is the new armchair expert on my mother. She has decided that the Metoprolol for mother's atrial fibrillation is a detriment so when she goes to spend the night there, she just doesn't give it to her. I was enjoying my peaceful times with a whole night of sleep, no whining, no begging for her to be quiet so I can rest, no barganing to get her to take her meds, reminding her that the toilet paper goes in the toilet and the wipes go in the waste basket with each trip to the bathroom, no explaining that there are no horses with riders parading through the house etc. Yes I feel that I'm going crazy. Now the small reprieve is threatened.

No matter how many times a similar post appears, I always benefit so much from taking some time to read through all the responses. Despite that each of our journeys can seem lonely and isolating at times, it helps to know there really are a lot of other folks out there in our shoes with whom we can relate and bond with somewhat here.

All the different situations and perspectives not only provide helpful information at times, but they often remind me of all I have to be grateful for in my particular experience - despite how difficult I might think I have it on any given day. And of course, they elicit much compassion for all my fellow caregivers out there. (And it's always good to focus that compassion on others to temper the tendency get lost in self-pity.) ;)

Hugs, prayers, peace, and blessings to ALL of you!!! Hang in there, and keep coming here to share and receive support.

I am so thankful for this website and so very very thankful I am not alone!!!! My mother is not yet diagnosed to have anything other than short term memory loss. I called recently and told one of the RN's in her family doctor's offices about Mom's recent behavior and asked if they were even told about her ongoing memory issues. The nurse told me that it sounded like to her that Mom has Altzheimer's. We hope to know more on the 11th of December what kind of memory issues or what not she actually has. Not that I am wishing for her to have anything bad, but she has been taking off her wet soaking diaper off at night and sticking it underneath her pillow or letting it in between her blankets and having zero knowledge or recollection that she even did that.

My stress levels and sleep levels vary from day to day and night to night. Some days and nights are good, while others not so hot. I know first hand how frustrating it is when I try to tell my far away siblings what's going on with Mom and their seemingly endless excuse formed into a question is "What do you expect us to do? We work?" I feel hurt and abandoned 95% of the time by them. But I am slowly coming to the realization that some day when Momma does pass away and they all will make time to go to her funeral, when they start saying to me "I shoulda.... I coulda....woulda...." crap I'm going to ask them WHY didn't they????? Once our Momma is gone, she's GONE....no not on vacation.....GONE PERMANENTLY as in FOREVER. That's what gets me about my siblings. My oldest sister said to me "you always think you have "time" left with your mother"......UH makes me want to slap her alongside the head and say WAKE UP OUR MOTHER IS 85 YEARS OLD SOON TO BE 86 AND IN POOR HEALTH!!!! IF YOU WANT TO "BOND" WITH YOUR MOTHER COME MORE OFTEN!!!! But alas, we see one of my sister's twice a year, my brother more in the summer and the holidays and the other sister a few times a year. We don't hear from my brother much on the phone, he lives closer to us than the other two siblings of mine. He is a Professor and teaches college kids and is too busy blah blah blah.....always a endless excuse......yeah I'm frustrated too. Your not alone!!! None of us are!!!!

I'm not sure how we got to be the "lucky" ones to watch our parent or parents deteriorate each day before our eyes and not our siblings, but we are in our positions for a reason of sorts.....maybe to make us stronger or maybe to make our siblings and family members regret more that they should be helping more....who knows. I'm just happy as a lark that I am not alone and that there are many many people facing the same (if not exact) situations and frustrations. Thank you for your post magikarp!!!!!

My wife is at home in bed with the last stages of FTD. She can't talk or move. It is 24/7 but I do have help with hospice and the local county sends someone over during the day while I work. Yes, they will take the money from the house when it's sold--but it's worth it now. I take solace when I can. I love her very much as do the people who care for her. A simple smile from her makes it worth the effort and she means everything to me. 35-years of marriage November 15.

This site is a God a blessing from God because of He sees what we all are going through on a minute by minute bases. Caring for my mom who has dementia. I have a brother who calls once and a while, still praying he will pitch in oh by the way I do believe in miracles. This journey is not for the faint at heart. My strength is from God alone. I have some phone support team of family and friends. I take Sundays off as much as I can. Get ready to take 7 days respite to see my children and grandson who live in another state. Mom going to stay in a facility. Taking care is hard and take a vacation is difficult. My relationship with my mom is getting better but God is changing me in the process. Love and hugs to all.

I'm in a similar situation. The lady I care for is just like my own mom.we all have our good/bad days,everyone does.the yelling screaming pulling your. Hair out.only stresses me out more .take 5 .five little minute s to breath walk read or just sit some where quite no noise just quite.you will find a calming. ,I know I do

Beside non-stop stress, I found that if you don't get sufficient sleep, you can start hallucinating. The lead up to that is strange, powerful dreams, and then you see thing that aren't there when you are supposed to be awake. Thinking becomes impaired. I am talking about less than 2 hours per night and some nights without any sleep. Happened to me. Mom is now in high-level, though non-nursing home care, in the dementia side of a nearby Assisted Living facility. The MDs in the ER of our local hospital call it "Platinum Care." Mom is so well cared for and I pretty-much recovered, and costs about 70% of what the least expensive nursing home in the area would cost. Mom doesn't need any invasive procedures - just good good care.

Yes yes God's Grace is sufficient! So glad you can see the beauty in the smallest things. I too been up all night with mom she can walk a little so i still walk her to the restroom with much needed assistance and did 2 loads of laundry im in ca. Its almost 5 am I hear you girl! Im with ya praying for us you all of us to ask God to keep giving up Strength. God bless.

Thank you all for your candid answers. Here it is 7:30a.m. and I'm already worn out. Two bed changes, a load of laundry, etc., etc.... And I haven't even started breakfast....not to mention my own pains. I try to find beauty wherever I can...the sunrise or sunset as I pass a window, laughter as he watches Everybody loves Raymond for the hundreth time, the smile of a little one I see in the grocery store. Sometimes I even think maybe I am the lucky one. Not caught up in the frivolous things everyone elseis rushing around for. God's grace is my sustainer.

Oh Goodness this website has definitely saved my sanity i was lost and alone thinking i was the only one going thru this myself, husband and my 4 daughters have been taking care of my mom last 7yrs. I have 3 sisters and only one im in touch but lives 2,000 miles away and get this punchline it will be very hard to believe me But one sister live 4 houses down from us and the other 2 blocks away last time they came to visit was mother's day Yes its the truth. I know hard to believe but..they say to busy working! (Because get this their Teachers ) well ive accepted it and we have moved along without them . So been taking care of mom she's 94 with dementia last 7 yrs and still going strong God bless her Love her so much and we give her the best care.i was burnt out heavily about 2 yrs ago and we decided to hirs help i have a lady that come 3 days a week for 8 hrs a day and she has helped tremendously. I work full time and my husband retired from the police dept on permanent disability. However he helps me a lot and 3 daughters that live here with us. About the same time my mom was diagnosed with dementia we were under water with our house so it was a big blessing to come and stay with mom and noticed all the help she needed and now more than ever when she had a stroke 3 yrs ago. My faith in God has helped me keep going and would never ever put her in a nursing home. Of course i never got any validation from my sisters because we were living here in mom's house said it was my duty. But i never took it as my duty im doing because i love my mom and want her to laugh and eat good and have the will to live as she does. Sorry didn't mean to get off the subject just giving a little testimony that their are alot of us in the same situation. My suggestion if you can at least one day only if you can afford it to find a caregiver to come for maybe 2 to 3 hrs once a week to have a little time to yourself if not i completely understand. Find call senior programs where maybe you can get a little financial help to take care of your mom we dont qualify but i dont know your situation but maybe you do . When your mom is resting its the best time to rest too. Talk it out if you have to i talk to myself all the time i talk to God to give me guidance. Find resources in your city. You are doing a Great beautiful blessing never forget that. Siblings believe me i had to forgive but not for them for me even though i do not have a relationship with them anymore they showed me their true colors i know you can never force someone to help so i gave up and know that it takes a special kind of heart to love and take care of the elder . Its so sad when the siblings fall apart but it has to come from their heart to want to help or their not going to care for her the right way it took me awhile to understand this. God bless and your in my prayers.

I to have been in your shoes. I helped my father care for my mother (who suffered from chronic schizophrenia most of my life - 57 years). We managed to get by until at 85 years of age he took a serious decline in health. He was nearly blind, doubly incontinent, barely mobile, suffered bad arthritis (like me), heart failure, bed sores, urinary tract infections, MRSA, shingles, chest infections, unable to eat anything other than pureed foods and suffered from vascular dementia. The last 4 years of his life were a living hell for us all. We went through every emotion know to man. Anger, frustration, anxiety, guilt, love, fear, hopelessness, helplessness, ending in an ever ending sense of doom. We ended up staring in a real life horror film we would never have bought tickets for. The last year of my father’s life he could only be lifted by a hoist, against his wishes he was admitted to a nursing home. Then life got worse for us all. I had to visit and lie to a man crying. begging to come home, then return home to care for my mother at night and wishing I was dead…. On and On it went .. never ending .. My mother bad mouthing me to my brother and his family in Australia.
Until on the 17th September my father died of septicaemia. My heart melted as I sat with him and I remembered the man he used to be. I prayed for him and eventually he past away. His funeral was a wonderful tribute to his life. My mother is now in a residential home. I still feel a mixture of emotions. I will always miss the father I was blessed to know when he was in his 60's and living a life he enjoyed and controlled. The father that died was a different man. He was tired and broken and needed to go home. RIP Dad. I just hope I can recover. I have not heard from either my brother or his family for 4 years, nor did they attend his funeral. So having siblings does not necessarily mean you will get help or support. I reckon a carer is like a red squirrel (becoming rarer) and will eventually be eaten by the ever increasing grey squirrels.
Hang in there and God Bless. The only thing I can tell you is that you are not alone.

I think my order is a little different but still involves the "rinse and repeat" function.
I can't say it gets better but what helps for me is looking back to remind me the day could be worse. It ain't no cake-walk now but I don't have a clue how I got thru some of the others which give me strength to push ahead. I have a strong belief in God and hold onto the idea that He knows and understands. It's not about some type of "reward" concept but rather the comfort in being embraced by His compassion. I'm not trying to sugar coat this cause I do feel your pain and think I am loosing my mind most of the time. Most times I feel like I am just punching the clock on life and not living.
Katie222....I feel the exact the same way!!.
My wifes SCI situation is very complicated and I find it harder every time to provide that fake smile to others suggestions and ideas. It makes it more frustrating when they seem to take my reasons why we can't go on vacation, travel etc etc as me not having a "positive attitude". I'm too tired to get into ALL the reasons to explain and find my self just trying to avoid the "helpful advice" of these ignorant but well intention people. Just the other day I had a nurse respond to my wifes muscle spasm with a blanket while giving me a stern look and suggesting I should dress her warmer. Really????...I try to briefly explain what is happening but am tired of getting into the details so I thank her and force a smile leaving her to pat herself for helping this poor wheelchair lady along with her skilled advice to the ignorant husband. Time to head home and rinse.....

I am probably being illogical, but it often feels like the longer this goes on, the longer it will go on. I no longer believe there will be any better days ahead. Then I feel bad for thinking that way, but it really does seem like it. Every time I see a picture of some faraway place, or even a local ballgame or anything more than 2 counties away, I think that I will never get to go there again. I get angry at people who do not go through this type of thing. The things they get to do with their time seem so frivolous.
I have no siblings. Those that do and are going through this seem to be having a lot of issues with getting no help. Siblings or not, people who are not going through this are so coompletely clueless as to what this all entails and I cannot believe some of the stupid advise I get...like "can't you go on vacation or a weekend getaway?" "Can't your Mom go on vacation with you?" ( Mom is 100% bedbound), Really????

Oh my heavens, I just posted my own topic about my dysfunctional situation ---- and now I see your post. I can't tell you what to do to resolve it - but I just wanted to let you know I hear you. I understand. I get it. I'm so sorry.

Somehow, even if the solution isn't apparent, there is going to be a better day ahead. We won't be trapped forever. My belief is that even though we might not be recognized for doing the right things here and now, the Maker knows.

You are not alone. Hold on.