I'm living in a manipulative, exhausting war zone of caregiving. Any advice?

My husband and I are planning on revising our will/trust. We have 2 adult sons, and 3 grandchildren. What have been the positive/negative experiences that you have experienced upon the settlement of your loved one's estate with a will/trust in place? Happyjack

My sibs used to give my Mother a few dollars every month when she lived alone. Money to just put in her wallet, go out to lunch ect. When I moved in with my Mother this came to an end. Why?? Because she now has enough money to live. No regards to the fact that I buy all the food, do the yardword, housework ect. Of course she has more money now - but I am going broke. I just let it roll off my back. This is only temporary but it really pisses me off. They don't visit often or take her anywhere - how about a few bucks at least????

Steve Dunwoody101, My husband Steve(same age as you), and I have been there with my 92yr MIL, now for almost 6 yrs. You can have vodka but other spirits work well too!! ;) You are honest and refreshing with your views,....Thank you for your candor here! We are much in the same position as you so know exactly what you mean. You made me laugh and that hasn't happened for a long long time. I will look for the book! Thanks again for making this s**t on earth more uhmm..... a little more bearable!!! =)

I agree it is good to see if there are financial alternatives.If you do move her somewhere please don't be out of site out of mind to her care. These institutions that are more costly don't always do the best job either even if you are paying over $3000. An adult family home starts out about that price assisted living is more. If you use have to use medicare the invironment is usually adequate but not like being in a loving home of a relative, so visit often. If there is contention as you say then she is not any happier than you are.You can't have a fight if you don't fight back. I am still telling my self that every day. Bite your tongue and don't react.
I to take care of my mom without any help from my brother. It bothers him to even talk on the phone to her because she is losing her short term memory and says the same things repeatedly...it makes him sad. I say "live my life". I am losing my mom on a daily basis right before my eyes. Yes at times I feel sorry for myself, why do I not get any graditude? I do at times feel annoyed at her because of the snide remarks about how bad she has it here. Then the next second she is all nice and happy. It really is like raising a child. I raised 7 of them. Financially my mom could go anywhere and probably have enough money to last till she passes... she is 86 this year. I did have her in an assisted living and it cost $3800 a month she had 3 meals a day if she wanted. Meds delivered, various entertainment, her room cleaned, laundry service.
Problem was she wouldn't let the cleaners in to clean(she said she already did it herself) she hadn't. Meds were given on an empty stomach that made her sick.. She was never clean, her hair never combed, dirty clothes, didn't remember how to brush her teeth or put in her hearing aids.. She didn't even realize she was dirty and smelled. My mom was always clean and beautiful. They told me they couldn't make her shower. It is against the law. Meds were given on an empty stomach and she was always combative with me when I was there and tried to get her cleaned up, wash her clothes, clean the kitty litter box( awful mess). My husband agreed it would be better for her to live with us and I had the power of attorney anyway. It has been 9 months and we are still figuring it out and have some bad days too. The thing that has helped me the most is giving her vitamins. We tried all of the ALZ drugs and she was very combative even to the point of hitting me and being verbally abusive and cussing even in public. Her neurologist is very proactive about vitamins anyway and we took her off the ALZ meds. She isn't on any other meds as she stopped taking them herself before she left her home with her docs permission. I think she really wanted to die, was depressed about losing her memory. I have always taken the natural approach with my husband and my medical care as well. DR prescribed a high dose B with folate called Cerofolin. It is not covered by insurance and is $85 a month. She gets a coconut oil capsule, 5000 vit D, 400 vit E. Sam-E on an empty stomach before breakfast.( Is a natural mood elavator and helps with joint pain) a fish oil capsule for her heart, CoQ 10 for her heart and a multi vit for women over 50. May not work for everyone but it sure has worked for her. I can tell you she is more pleasant with me, happier, still has a terrible memory but can carry on a decent conversation about current news when she watches the news. Will now watch a movie all the way throudh with us. Loves music and cartoons. If her quality of life is better so is ours. Death will come to all of us when it is time. My mom wishing to die never made it happen and all of us wanting our lives to be more pleasant is not just going to make it happen either. There is "always" an answer to every problem but you have to find it. It is not always easy but why live in agony. ASK YOURSELF HOW WOULD YOU LIKE TO GIVE UP ALL OF YOUR INDEPENDENCE JUST TO LIVE WITH A RELATIVE THAT DIDN'T WANT YOU THERE ANYWAY. I THINK WE WOULD ALL BE A LITTLE CRANKY. Care giving should only be done by someone who cares about the other person but still loves themselves enough to know when enough is enough .
Good luck everyone.

Personally, I think I would have an easier time of it being in the French Foreign Legion than I have doing caregiving! :-) LOL W One parent is too lazy to do anything even though he still can, in my estimation while the other one has become the consumnmate actress and lies on that bed all day as I fetch and carry for the two of them all day long. Cooking, cleaning, running errands, fetch and carry. Hey, look, I gotta really start preparing for my trip to cuba this coming Thursday. Have a great Sunday, y'all (as they say down here in Texas, hey, what do I know? I'm a transplant from New Yawk) LOL :-) Berst. :-) W I mean I bring them down here to Texas to live with me and this what I get. Go figure, huh? :-) Wayne

Have an honest, realistic discussion with your husband about your mother's care and living arrangements. It might be best to move her to an assistive living home and the two of you can work on mending your relationship. As a nurse, I can tell you your mother will die if she has dementia a lot later than your marriage will die. If you do not tend to your husband first, then you can expect life to become even more difficult than it is. These are the facts: caregiving a parent is NEVER easy. You can either weather the events, or something else will suffer. Your choice.

I would've siad Hell on earth, but shit on earth is perfectly acceptable! Thx for the input Dunwoody101 :-) W

You are right about the war zone. There are battles between you and your siblings; one between you and your spouse; one with you and your wife; one with your spouse and your mother and finally one between you and your Mother! Too much for anyone to handle alone. My advice would be to find the nearest area Agency on Aging Office and seek assistance from local professionals to discover help in the form of support groups, possible financial aid (altho it is hard to get),and any local services or resources available.

You and your wife need emotional suport - are you seeking it? Also find your local Alzheimer Assn for guidance and assistance, regardless of Mom's level of dementia at this point. It does not improve, so informational preparation can only be helpful.

Any opportunity to get what feels like positive support for you and your wife are absolutely critical at this point. Are you getting "sitters" so you can go out alone? This doesnt always mean an expensive nurse! College students, nursing students, retired people on limited incomes can come for a couple of hours so you can both escape. Belong to a church? Ask there for help. Clearly your brother feels anger, hurt and rejection that you have now taken Mom away from his care. Consider this possibility: Big brother rides in again to save the day - and he may not even be aware of his resentment stemming from a lifetime of sibling rivalry. Just a thought and a possible issue for you and your brother to address so you can both survive Mom's remaining years with the least bit of anger and resentment and sadness, not only towards Mom but each other as well.

If Mom qualifies for Hospice based on dementia, they are an invaluable support team to help you manage.Perhaps your Mom living with you is NOT the best option even though initiated with love. Options: let her return to your brother, find her someplace to live where they will handle daily management or get assistance at home. You do not have the option of leaving and dumping this responsibility on your wife! it is not her mother and even joking about it could possibly fuel anger and resentment from your wife due to real fear.

Hang in there. I am in the same boat of hell dealing with my elderly parents. I am an only child also. Ge help from as many services available to you. I have not quite yet been able to develop the "Thick Skin" needed to cope and not go insane with mounting responsibility. It's a juggling act. Work, home, family, travelling to care for parents. The list grows every day. Perhaps counselling? My mother-in-law suggested that to me. Perhaps not a bad idea. You are only one person. Not an army. I see elderly people everyday that are still able to care for them selves and are enjoying life and not sitting around reliving events that took place 60 years ago. My mother didn't take care of herself. She let her feet go to hell and then slowly the rest of her as well. She blames everyone but HERSELF for all the physical problems she has. Do what you can for them, that's all you can do. I have been dealing with this for 21 years now. Try to keep your sense of humour. It will save you in the long run. Caregiving is the hardest job in the world. Hugs to you all !!!!
Thanks,
Anksana-moon (my name is egyptian)

Oh dear. Sigh, about this situation, and even some of the answers, which are all good because they add different emphasis, and that should all help barneyb22 think more clearly about the various courses - the one theme we all have, are find a way to come to terms and design a solution that does not deplete you and your family. Very important. The one piece I want to add, is that inter-sibling communication is also important - on paper, it may seem that it's OK to just separate yourself, and that may seem fine if you have always been the only child. But when you have siblings, there is a relationship, lifetime memories of what used to be home, in whatever form. Angry with them or not, when I hear one of my 6 sibling's voices (2 now deceased) on the phone, across the years and miles, my heart still lights up, and I remember, I belong somewhere, where they knew me as a child and I knew them. The other thing about sibling relationships is that battles often retain completely unproductive styles from old family roles - but the battles do not represent the whole person as they are now. For underneath something or other, they value you too. I agree that this does not mean you have to pay for all yourself. Nor should you find it easy to take on your mom as her health deteriorates, without paid help. Your brother and his wife had 5 years to adjust to living with your mom, when her health was better - so they have many impressions of how things "should" or "can" be done, which they don't understand, cannot translate directly to a new home and new family - yours! Document the differences, the struggles. And maybe send your brother a letter or call if you can manage to just say, you thought you could handle it, and wanted to help out, but for whatever reason, your family needs, mom's changes in health or confusion in a new setting, you find it's much more than you expected, and you need to find a way out. Maybe, you could move your mom closer to them, but in an assisted living home and you could both contribute financially to it, in addition to govt money - does your mom have no money or likely legacy to add? If she were closer to them, they could visit her and continue the closer relationship and care role they have developed, but you would pay a fixed amount, and visit regularly, and add in anything else they would want that you could include - and maybe work it out together. That's my wisdom of Solomon here! All best wishes, it's not easy, but it helps to really take time to think what is important to you, and see if you can add that piece, while honoring the same of the others.

You are in an immensely stressful situation. I don't blame you for wanting to get away into the garage! But that's no way to live and we are here to help you navigate your way out of this horrible state of living.

I agree with all of the above. Get all the facts you need about your options. Is her social security enough to live on if she moves into subsidized housing? Leave no stone unturned. Are your siblings in any other way supportive? Do they understand the gravity of your situation? If they don't tell them. Please feel free to vent all you want! We're here for you.

Well.... quite a variety of answers. What I have seen from people around me is that many times although not true in my circumstance as an only child is that family likes to try and appear to care in the end stages of life to see what they can get from it. All you can do is your best, but don't wear yourself out too much in the process. Do what you know is right and stick to your guns.

The one thing I always said with my mother (long story) is that I always went to the top of the mountain with her as far as I could go. Eventually she paid a price for her own choices and behavior. If she involved others in her drama I would go as far as I could go and then it was hands off.

The key for me became even as a caregiver is that it was boundaries. I had to set boundaries that I could live with and I did. Surprisingly after her death I have no regrets because my mother lived her life a chosen way. She surrounded herself with people who were vile and bottom feeders. I had to fend off what I could and how I could legally, but if she wanted them in her life, I had to find a way to still protect her while giving her freedom of choice.

I learned to walk a fine line, but it worked. I have no regrets except for my own mother who missed out on so much of life because of her behavior or her psychological issues were never diagnosed so she could live life to the fullest, but that was between she and my father. I had to respect that whether I liked it or not.

If you put some of the boundaries in place for your own life, I suspect that things will become a bit clearer for you and you may even find yourself distancing from people that you thought you really liked because you see their behavior.

Don't let them control you. Control your choices, your reasons and if other things get in the way of that then you need to accept or reject it when it comes to caring for those you love. None of us can really decide that, but I found for me, boundaries was the key in my mother's insanity.

There is no advice or answers. This is shit on earth. And it will never get better. You will never resolve this situation. As someone who has lived in this hell for close to three years, all I can say is 'protect your self.' If you seek 'answers,' you will only drive yourself more crazy. just wait for the elderly to die and hope to reclaim your life. Period. Hard, but true.

Who has power of attorney? If you do...you shouldn't engage your siblings and do what you need to do to be the BEST caregiver you can be. I look forward to your answer and your reply to JeanneGibbs's answer. Stay tough - garages can be REAL cold!

Well said Lizann.

We all are. I've been played for yeaRS NOW (16, I believe). Just grin and bear it. I've developed a thick skin (you have to in order to survive in this game) and a sense of humor. The abuse has only been verbal. Thank god, it hasn't turned physical. :-) Wayne

I think it is time to write off the idea of getting financial support from the siblings. If you expect nothing from them, you will not be so disappointed. This is a typical situation from family members who can talk the talk and they refuse to walk the walk because after all they have "their lives" and as usual it is all about them, their needs and not caring "that much" for their mother. A mother can care for 3 children, often alone, --but 3 children can't care for 1 mother. It is were we are as a society. Sad but true. As an only child, I never had any "help" but managed to do all the care of both parents with some paid home health aides---how because I wanted, repeat wanted to do it. Many only children out there do the same.

Back to the issue at hand, decide if you can financially keep and care for your mother, examine all services she is eligible for an try to use them to make caregiving easier. Get a POA and use her income and assets to help care for her. The money she has is for a rainy day and guess what it has arrived. Use the money only for her and her needs,keep records of your money spent on Mom (we all do it). I think it is likely the crazy behavior of your siblings that has made this care giving such a horrible thing for you and your family. Take control of the your family environment. See if Mom can be managed. Remember, it will never be easy to be a caregiver, but it does have its emotional rewards.

Good Luck. It is a shame your siblings aren't there--but you need to let them go
it is you mother who really is important here. File their irresponsible behavior in the back of your mind for future contact after mother passes. Never expect help from them when the chips are down. Actually this has provided you with some valuable information for the future. It is important to know who you can count on in life and who you should not. Be civil to them, they deserve that for they are family--irresponsible family --but family.

Elizabeth

I have been where you are but without the promises of financial support - I knew there would be none. The toll on my family from my years of providing support and care for my brother, my father, and my mother while working in an exhausting career position resulted in my teenage daughter estranging herself from me from mid-way through H.S. senior year to this very week (30 months later). My entire family suffered from me working 24 hours a day to manage this, and with eventual loss of salary when I quit work as mom needed more care. No vacations in five years, my tires rotted on my car because I never left the house, and there were many more personal losses that I could list. War zone, combat fatique, it all rings true. And the rest of the family said "Well, you did this to yourself." Get ready for physical illness as a result of not taking care of yourself, and personal financial illness (credit card maxing, home equity loans, savings spendown, years of building a retirement or college fund lost,). There should be a term for all of this and a full Wikipedia definition for caregiver syndrome.
Now to give my advice. Your relatives pulled out of the deal, so you pull out of the deal. Pack Mom's bags, buy her a ticket, and let the relatives know when she is arriving at a local airport near them. Others will take advantage of us if we let them. The job you are undertaking is immense and those freeloader relatives need a wakeup call.

What's remarkable here is that you want to move to the garage.... and it's your mother! JeanneGibbs's answer should help you take a step back and get realistic/practical about taking apart and revisiting the various aspects of the situation in a new way. You've taken one good step by really identifying the reality that "THIS AIN'T WORKIN'!!" Sometimes people don't see another way, but they're not really looking for another way as much as they are stuck thinking that there ISN"T another way, and that the solution is somehow to cope better with the way things are. No, the solution is going to involve some real changes.

I agree to needing more info. Would love to help and/or hear other's input. But, I will say, first and formost. You need to take care of your marriage and your health. Without those....yes, you will spiral down.

Wow I like what you said...jeannegibbs! I agree she needs a new place to live, where you can visit her as a loving son, not as a soldier in a combat zone! Well I have the same issues but worse I feel like I been living and still am in a "Nazi Germany Concentration Camp"! My mother having a rifle on her back and I am the one only one helping her but seems shes the Boss. Shes like that cartoon Dr. Jekyll and Mr. Hyde" during the day shes could be fine then all the sudden at Night she turns into a Monster seems!

Finances are often least complex, so let's start there. Originally the intention was that Mother should have her own living arrangement and this would require additional funds, which Sibs promised to share but then backed out. So ... Mom moved in with you. Have I understood the situation correctly?

What is Mother's monthly income? Does she have any assets? Where did she live and how was she paying for it before she moved? Is she capable of independent living? Have you looked for subsidized housing? Does she need care? Would she qualify both medically and financially for Medicaid? Give us more information about the financial picture and perhaps some of us can make suggestions.

Your profile says Mom has depression, but it sounds like more than that is going on. Is she being treated for the depression? Does she have dementia? Has she always been manipulative or is this new?

It sounds like she needs a new place to live, where you can visit her as a loving son, not as a soldier in a combat zone! So tell us more about her finances and her health.