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@kathy - 40% of caregivers die before the person they care for. Then there are the ones whose health is compromised by caregiving though they do not die before their care receiver. I suspect the % of those so affected is quite high. I know my health has been negatively affected by caregiving and I am a distance caregiver.
Distancing or detaching are not selfish - they are self protective. It is not good to push yourself to the point of collapsing, but you know that already, so the question is why do so many do it. We have to care for self - put the oxygen mask on ourselves first. Sounds like you are caught in the FOG. Check my earlier post for that. Let go of the false guilt. ((((((((hugs)))))))

rain - good for you. Did you make a drs appointment for you? From what I see in this forum and with my own experience with my mother often the main thing that helps at this stage of life is meds. She has vascular dementia, borderline personality disorder and narcissism and without meds is agitated, paranoid, delusional, has psychotic attacks... With meds she is calm and her life is manageable. A regular sleeping pill has been added as well as an antidepressant recently. As the disease progresses the meds need to be adjusted. Keep focussing on and looking after you.
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I have read this entire thread. I am no expert, but in all my years of hearing caregiving stories and being asked caregiving advice from many friends, there had been a line of thought that had popped up on many occasssions - She'll be fine and you'll be dead. This is not okay. There is a middle ground. No one can sacrifice so much to care for a loved one to the extent that they are hopeless, health less and penniless. There is a difference between sacrificing your personal welfare and providing the best care you are able to for your loved one. This does not include sacrificing your own wellbeing for your elderly relative. Love them though you may, your life will continue when they are gone and one must prepare oneself for those ensuing years as well. Bear that in mind and that will put your decisions in greater perspective. No plan is perfect, but complete self sacrifice is a choice, not a mandate. And I do not believe complete self sacrifice is really the right thing as far as caring for the elderly goes. Care and concern for comfort, safety, welfare and general spiritual well being is the best we can hope for. Providing for their every whim like a handmaiden is only really crucial in the final days as death approaches. If one has the leisure to do it beforehand, the desire, the health and the means then God bless you if this is your heart's desire. Go for it.
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In my unprofessional opinion, Haldol is used in mental health facilities etc to knock the patient out to make it easier for the workers, but better for the patient!
I too would like to join the chocolate party, but not under a bridge. How about a great spa where we get massages and heck nails done too!
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Total typo from my phone, sorry. I definitely meant Haldol does NOT help the patient. Jeez where's the chocolate :)
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If you have the means and can manage to find respite care for your son, I recommend you and your husband take a nice long cruise, the more luxurious the better. Let the staff at the ALF take care of your mother. Assuming you have POA, all you really need to be available for is to authorize changes in her level of care.
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I have a similar problem about how I feel mentally. My doc called it situational depression and prescribed Sertaline for me. It helps so much.
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After months of running myself ragged trying to deal with mom, I finallly had what I consider to be called a "nervous breakdown".... I was crying everyday. I couldn't even get of bed some days.... I thought there was something seriously wrong with me. Had 3 cat scans, and numerous other tests..... Finally, the doctor found out what was wrong. DEPRESSION...... Had to go on an anti depressant pill. Within 2 weeks, I was back to my normal self. This was the worst time of my life. I let my mother take 3 months of my life.... I vowed this would not happen again. I called a home health care agency and got mom an aide. She lives there with her round the clock. This is a lot less costly than a nursing home would be. I do not go over there everyday like I was originally doing. I told the aide to only call me in an emergency.
I visit when I want and have removed myself from day to day caring of mom.
If I did not take this step..... I would probably be in the hospital myself. You cannot do it all by yourself. My breakdown taught me that. My immediate familly suffered because I was trying to take care of mom.....
Please take care of yourself first. Don't feel guilty because you will be the one getting sick and mom will outlive you!
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Just to let you know...I have felt the same exact way. My mom is in a facility and I still have a teenager at home yet. My job and marriage have both suffered. At times I have made semi-plans to just pack a few minimal things and take off to another state. It's so hard. Just stop and focus on yourself, and do not let anyone make you feel guilty. Let the caregivers take over caring for your mom, and you just focus on the really big things for your mom. That is their job. You are on your way to getting so sick that you may not be able to easily pull yourself out of it. You need to be their for you son and husband, because that is your job. I wish the best for you. I know it is very hard. You are a good daughter.
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How does one pay for these assisted living facilities??
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Only child, it can be very expensive. The cost depends on the level of care. Funding is either private pay or if no money, Medicaid.
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Every one of us has a breaking point and have to pay attention to the warning signals along the way so we can get the help needed for them and for us! It didn't take me long to figure out where my limitations lie and got extra help. I look at it as mandatory not optional. I've told my parents many times that I love them and will continue to all I can but if I'm dead I can't help them at all.

Took mom to the grocery store this week and while I was checking out I noticed a man around her age was talking to her while she was waiting. I walked over and joined the conversation. Out of nowhere he starts crying saying that his only caretaker, his nephew, dropped dead that week at age 56 and he has no other immediate family. That friends brought his ashes back to the house and he has adopted the cats. It was so heartbreaking. Told mom cherish the help you have from your daughter.
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I have a few suggestions to add to the very good ideas here. Once your mother's situation is settled, I would say to be sure and do the following things: 1)get caller ID and do NOT pick up the phone. Choose one hour at the end of the day, say 5pm, and listen to the day's "mom" messages, and decide what you will do when you reply the following day. Reduce the number of phone calls to the mom gradually: wean her off it, from every day, to every other day, to every three days, and so on. Aim for the interval that is the least stressful for YOU. 2) Don't rush to get on drugs; try some cognitive-behavioral therapy combined with yoga, exercise, and other daily self care. Give yourself a little time for the selfcare to smooth your insides out. I gave myself six months, and said, ok, then I'll go on antidepressants or anxiety meds if it is really necessary; but by 3 months of a strict self care regime, I did not need them. (And no, no guilt so far, but who knows what is ahead). 3) Make a list of the patients you are caring for in order of priority: number one, YOU; number two, your SON; number three, your mom. And keep it by the phone, and stick to that order of priority in any given decision. Let's say for example you have a regular dental checkup, you mom's NH has called, and your son wants to go for a visit somewhere, what do you pick? You pick your dental appointment, and then your son's visit, and only then your mom's NH callback, and only in the window of time YOU have set for it. This is what some therapists call "setting firm boundaries." But the main thing is, get and use caller ID to corral all the "mom stuff" into one "deal with it all" limited hour or less of your day, and ideally reduce it to once a week. Finally, make sure each day contains something that brings YOU joy and pleasure and takes your mind totally up. Good luck---this stuff is really awful.
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Rainmom, I really don't understand why they would be calling you for every little thing. Can't imagine the time they r wasting calling you. Surprised your Mom can use a phone, mine hasn't been able to or over a year. If she has a phone in her room, take it out. Talk to the Administrator. Tell him/her that these frequent calls are effecting your health. That with an autistic child and a husband, your hands are full, reason why mother is where he is. The only calls you want are emergency calls. The ones they need to write up per the state. She fell for one. Maybe you can set up a weekly call with her caretakers outlining her needs or concerns. You should be told about med changes. Like said, a lot of money is changing hands. They need to handle the little stuff.
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By the way---sorry for double post---but my life is so much happier and more constructive after excluding my horrible toxic mother from it. I'm sure there will be a funeral at some point; fine. An additional relief. I know that sounds cold but there is deep abusive history here, and one has to live life in as positive and constructive way one can. For some of us, this requires complete cutting off, unfortunately, so as not to be dragged back in to the poison pit! I am glad others have a happier relationship, but for some of us, it is the only way to survive.
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Just have to tell you. When Mom needed rehab, my daughter recommended where she worked. Realized then that daughter was second as POA when I got calls for this and that. Told the facility they could talk to daughter when she was on duty. I only got calls after she was home. Really though, losing her comb sparked a call.
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My opinion for Rainmom ties into what I'm going through right now also.
Rainmom, get professional help (Mental therapy with a LCSW, psychologist, etc., through your health plan, if it covers it) to get over the guilt. I made an appointment for next week so I can get some coping strategies for dealing with my angry mother. I can't wait to see what they have to say! Obviously, we can't figure it out ourselves, and that's when we should get help. We are toxic to ourselves if we don't. They will teach us what we don't know.

In my case, I relate strongly to Parentalptsd. My mother was not physically nor verbally loving when I grew up, but I was never mistreated. I just felt "in the way". I found out at age 11 that I was a big "oops", as my mother was separated but still legally married to her first husband when she got pregnant with my father. They were drinkers and "got caught". They married even though my mom was not divorced from hubby #1. They divorced 5 years later. It was a crappy childhood.
I stayed in touch with mother all my adult life and she was at all family get togethers. She always wanted to be the center of attention.

Now, she's 92, has Alzheimer's level 5-6 and dislikes me very much. I just put her in a memory care home and she attacked me on the second visit. She loves my husband but can't stand me. The "normal" reaction would be to not see someone if they don't want to be around you. Given my childhood, my feelings are only lukewarm towards her. Hopefully, the therapist will help me deal with her.
We all have our own difficulties with this damn disease and I'll take any help I can get. Like I've said, "I'm doing the best I can." We are not their saviors. The only thing we owe them is their safety, food, shelter and basic comfort. I'm sure you have provided her that, as I have. Do not go crazy trying to be superhuman. She's fine.

I'm watching my best friend loose it all (health, mind) because she made a promise to her grandmother to keep her at home until she dies. At this rate, my friend will die first from the stress. Those nearer death should not affect the lives of their caregivers to such a point that they suffer sickness/death. At what cost is caregiving?
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I found myself hesitant to post this morning. I find myself getting irritated by posters who get pages and pages of good advice but come back with "yeah, but..." Now that's me! Thursday when I was going to make my dr. appointment I honestly lost track of time. So I was going to do it Friday after I picked up her rxs and had a short visit. The visit actually went well. My brother was there too and I spent most of the hour watching her put him through a personalized version of "who's on first". She was messing with him - I knew it and she knew I knew and we had a good chuckle. I left feeling pretty good. I thought maybe she had turned a corner and was beggining to accept her new living arrangements. I actually had an appetite for the first time in about 3 months. Then the phone rang at 8:45 this morning. When I told her I couldn't come get her the hate started spewing from her. Someone suggested I tell my mom I had a cold to get her to back off - my brother has to have cancer surgery in 6 weeks and finally told her about it a few days ago - along with my need to have a surgery I've been putting off for a year. This didn't even put a dent in her. She is incapable of thinking of anyone or anything but herself. I won't go into the gory details of the call but suffice it to say it took 90 minutes for me to stop shaking - for my heart to stop palpitating, to get a grip. I take the calls because if I can defuse a situation vs. her getting kicked out, I want to try. I can't deal with having to move her again! I was going to visit her tomorrow but I now know that's impossible. I will not see her again until I see my doctor. As God as my witness (said in my best Scarlett Ohara voice - I'm trying to hang onto my sense of humor since my sanity is on its way out) I swear I will make my appointment Monday. I feel stupid, stupid, stupid for thinking things were going to get better. I'm sorry to you all for not acting on your advice earlier! Please don't be annoyed with me.
On a side note I did want to respond to comments regarding my son. He is nonverbal and functions at about a two yr old level. He is the light of my life and rewards me everyday with the most beautiful smile you've ever seen. My most peaceful moments are when we'll take a nap together - I put my arm over his chest and feeling his heartbeat sooths me. I am beyond grateful that I will never be able to do to him what my mother has done to me.
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Rain mom, no apologies needed, and I can't imagine anyone is annoyed with you. Rome wasn't built in a day and all your BS ain't going away today, but you're working at it, chipping away. Keep venting, gabbing and gettin one foot in front of the other.........
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Great! Let us know what your doctor recommends and I'll do the same. I hope you're able to speak with a mental health professional also to get suggestions.
I'm married to a Mexican man whose culture worships mothers. He and moms doctor (Hispanic also) are always saying, "Come on, she's your MOTHER and she has Alzheimer's", like that's supposed to shut off all my hurt feelings. I'm trying not to take it personally, but when it goes along with your/her past, it's hard not to.
Good luck to us all.
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Like Tina Turner, I just couldn't walk away. It's not that simple. After my mom became too much to handle and I realized my life revolved around her, my survival instinct kicked in. I found her a senior citizens residence here in the Bronx, and she's free to live the rest of her life as she pleases. Sometimes she tries the guilt trip like "You threw me out like a dog," "You didn't want me around your kids," blah, blah, blah. ... I pretend to play the violin to let her know this kind of emotional blackmail doesn't work anymore. Poor thing keeps trying.
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when my uncle was in a nursing facility, my aunt got calls all the time. Finally, she told them to only call her if he was ill and they were sending him to the hospital. I know that sounds odd, but she was at her wits end. She visited him frequently as did my cousins. But she could not handle a call every time he didn't want to take a pill or wouldn't eat his dinner. His doctor/NP called with updates on his case and she would call the nurses desk to get updates but the difference was that it was initiated by her and on her schedule. We all need downtime. One of my sibs or I visit my mom every day. But sometimes, esp. when she is in one of her moods, it is hard to sit with her and listen. It is good to have a day or two off to recover from the constant complaining. If you can enlist other relatives or her friends to take turns visiting her maybe you can get some respite for yourself. And yes, keep up your MD appointments and your health. And don't feel guilty if you are not on call every second of the day. The facility gets a lot of money to provide care, comfort and safety for your loved one. Let them do their job. You can ask them not to call your number for her or use your answering machine to screen. I know that sounds harsh but it maybe what you need to do.
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This is my first time posting but your plea touched me. You mention your autistic son which no one took into account. You can slow or stop the calls about your mother but you still have the 24/7 responsibility of caring for your son at home.
Is it possible to hire someone to stay with him while you and your husband take a little break to reconnect? You deserve some relief and happiness and fun. If you can remember what those felt like.
I wish you well.
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Its funny how timely your post is, Eddie. I was just thinking along those lines. This morning my mom told me she was just going to leave and go live by herself. Mind you, she cant change her own Depends without getting feces everywhere and was just moved because we were asked to leave AL because she required more care than they could give. But - I'm going to remind her that 3 years ago at her request I signed legal papers saying I would make medical decisions for her if she were deemed unable to do so. She won't recall this and will deny it but I will continue. In September her drs made that determination. I will arrange to have her retested for dementia. If by some miracle of miracles she passes then I am off the hook and I will turn in my DPOA hat and files and she will be free to live or die in unbathed squalor. I will be done with her. If she fails the tests - then I go forward, armed with my own Valium (I hope) put boundaries in place and if she gets booted from where she is - which is a lovely place resembling a posh ski villa - she will be place in a facility for dementia/memory care. There we will start with boundaries from day one. Sounds harsh but it is what it is.
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Isn't it something how parents use their kids. I don't have that problem with Mom but would have had with MIL. She could get her boys to do anything for her. She did it very suttle. Its called passive/agressive.
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Rainmom, you don't need valium, you probably need an antidepressant. Much better than valium. Antidepressants are not addictive. From what I've read, valium can be.

Second, mom has dementia, right? You can't expect her to be considerate of you, understand that you can't come. "Mom, I have a cold, I can't come today". click.

You don't wait for the " oh, I'm sorry you're not feeling well". She's no longer capable of that. You need to put up firm boundaries and visit on your own schedule, when you want to.
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One more thing. You make the doctor the bad guy. " the doctor says you have to...."
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Babalou - thanks for the advice. Just this morning I did the "your doctors say..." She replied with "what doctors? I haven't seen any doctors! I don't even know what he looks like". Me - "Mom, Mary and I took you to the doctor 10 days ago". Which was the truth. I've been at this for five years with her. Granted she really took a deep decline in August - but I've pretty much tried everything to get her to be the tiniest bit more cooperative and less hostile.
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Rainmom,
Get on the Alzheimers Assoc. web site and read about what's involved as she progresses through stages 1-7 (then death).
I didn't have a good working knowledge of what this disease is all about and I have (intermittently) taken care of patients with it for 36 years.
You will learn a lot. It may make you realize (as it did me) that she won't ever be the same person she was. It seems to exacerbate what her personality was before she was diagnosed. There are some OK days and some bad days.
If you're really serious about completely walking away, could you get a sibling or family member to do it? Check out if she could become a ward of the state. They can't force you to take care of her.
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Has she seen a geriatric psychiatrist? Is she on meds to ease the agitation and paranoia?

The only way to get through this, in my way of thinking, is to remind oneself, over and over " I'm driving the bus: I'm driving the bus".. If she takes the wheel, you'll all end up in the ditch.
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Thanklessjob - it's pretty much me and my two older brothers. My oldest brother has as little to do with her as possible and it has been that way for years and years. I don't blame him - he has aways been able to see her clearly. He has however been very supportive of me and any decision I make. My other brother is more tolerant of her - he is her favorite and generally gets her better side. He would probably take it all on but he is having cancer surgery right after Christmas. I would probably try to hang on until he is feeling better.
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