I was the the caregiver for my Dad and my worthless siblings made my life a living hell.. From dealing with adult services and law enforcement. But i learned the hard way, being a caregiver for a loved one is the hardest job ever and get used to everything being ur fault. Well im here to let you know if your in a predicament like this make sure you arrange in writing some kind of agreement of a final payment. I was so caught up on helping my dad, I didn't even think of when his condition gets beyond my capabilities. Well that time is here and instead of family members thanking me they look as if I spent the whole time draining his account. When in fact I was using my own money to purchase medication, vitamins, glasses, etc... Well now my job is over no help from brother and sister, im now receiving food stamps and living with my mum. Not what I planned at all.. Sometimes we get so tied up thinking about the lose of a loved one and our own life gets over looked. Make sure you look after yourself 50/50 maybe 60/40 and just remember once the siblings gets to tough on you, just start walk in.... Because once they start it never ends and they won't feel thankful for what you had done nor will they feel as if they owe you anything. Just get the mind frame as if this is your job.
Look at my screen name - been there, am there. Brother and sister did nothing for 5 years. One too far away (but moral support would have been ok), and the other just wanted whatever money they had left. My Dad went on Medicaid pretty much the same time we knew he would need long term care. I had to spend down all their money. Mom was still "in the community" at that time. The money grubbing sibling got a lawyer to make sure he/she got their fair share. FAIR???? Not at all. I did it all by myself, caring for two parents,one with dementia and the other self medicated. FAIR? I think not, but I live with no regret and they are to deal with their own emotions. Dad passed and Mom is now in a home. They call and text now. Whatever....So finances...all I can say is don't get trapped in the same story with your Mom as you did with your Dad. You don't know when she will get sick. Don't do round #2. Get the house in your name. Does she have a living will? Find out. Are you employable? Being with people definitely helps. Use this time to plan for your own future. Put YOU first.
Wishing you a very bright future after care giving,
xo
-SS
Then as far as dealing with siblings, they will never recognize what you do 24 hours a day, 7 days a week. Mine did not appreciate what I did and by the way, because they were far away, my mom ended up giving them more money and showing them more kindness than she did for me, because she was trying to win their love. I agree, this is something we all need to think about and you need to stick up for yourself.
When I finally brought that to the attention of my mom, she said... OK I will give you my house. The only problem was that she didn't own a house to give to me. It's important to choose to take good care of yourself to the extent that you need to. When a parent offers to pay for the coffee or medication or anything else, do NOT be silly and refuse. Let them pay and take accountability for themselves. Keep records and a detailed accounting. I figured that out way too late.
I chose to be "that kind of daughter". I wanted to be the good one. I wanted to be kind to both of my parents. I chose to make them my priority. For the rest of my life I will have good feelings about doing what I felt in my heart was right.
For the rest of their lives, my brother and sister will not have those good feelings. That peace in my heart is priceless.
Every caregiver should set up their own retirement account and send a notice to everyone in the family about where it is, and how they are losing the opportunities to grow that income by taking time to care. Maybe even call it by a special identification, this is the Caregiver Retirement account, in case other family members step in - contributions need to be planned, regularly, for a caregiver in a working world is not losing money, mostly - they are losing work time, time for training, for building their own retirement savings.
I found an excellent book that looks directly at family-care relationships that combine the personal with the professional - "The Nanny Whisperer" - although it describes the need to understand that although one expects a nanny to love and nurture a young child - for that person, it is A JOB - their time is not their own, they must focus attention on the child. It is a good book for setting up expectations - and the last chapters are particularly good, for they address the questions that come up, the personal relations stuff "what if the nanny does a better job than I do as mother?" "What if they think they know more" -
The focus in our culture on "freedom" and "responsibility" - are based on values of young males of working (or fighting) age - designed in times when any home care was left behind, delegated to whoever would do the job. The role is then ignored, or praised and put on a pedestal but still left behind for periodic visits. This is our society's idea of "normal".
Yes, there are cultures and settings where some families still live nearby, or some where working people hire caregivers, but the topic is left very vague, about what care is needed, what is enabling or what time does it take for a caregiver to learn how to do the job that is needed?
And even science which is looked to for most of the expertise - those scientists were often never involved in direct care giving - so they provide medication to calm anxieties or belligerence - and create ideals that do not fit each situation in many significant ways - leaving siblings arguing over standards of care.
Obviously I have a position on this topic - and it is for caregivers to come out of the shadows, talk with each other (this list is a great resource by the way!!) - and identify the nature of the job, the time, worry, problem solving it takes - TRACK it daily!
Have chapters on "Perceived goals for this month..." because needs of the elder person evolve, new risks emerge, and the official systems send in only part time helpers who then leave - no one spends time with long term helpers, but they are the ones who are the backbone of quality and dependable care, who see the first signs of new risks, and who learn by experience to address them early - but often so early that distant, busy people, don't even see the size of the risk and the strategies to resolve them and keep things healthy.
Nobody knows what any job is really like until is becomes his or hers. Wasting your breath making them understand.
If you are new to CG role, have parents sign documents giving you financial reward after they die. If they cannot pay you, sign over house w stipulation they can stay til death, update will etc. No need to tell siblings. If they cared, they would already know. Good luck.
I sympathize with you and your situation. I gave up my life in another state and moved in with my parents to care for them. Now, as mother was admitted to a nursing home, I find that the state of Pennsylvania is one of two filial law states, meaning that adult children CAN be held responsible for the money spent by Medicaid and others to keep their parents in a nursing home. This is well documented. All you have to do is google Filial Law in Pennsylvania. I am about to move my parents, their belongings, bank accounts, etc. as well as all that I moved north almost two years ago back to the south where I have a church and many good friends, and where the state is not a filial law state. For those of you reading this who live in Pennsylvania, take heed. Your children may not only not inherit a dime from you, but they may be sued in this state to collect for the parents' care. I am slightly oversimplifying, but it is an important thing to research. If you are an elderly parent, you need to take action now, before a five-year look-back and begin to rearrange your estate if you have not already done so.
I have mentioned, its just me out of 3. One brother is 7hrs away, the other is going thru a divorce, so no help there. But, they support me in what I do. They realize that what money Mom has is going to her care. They aren't looking for their share. This mindset that Mom/Dads money is mine really gets me. We have told our kids that we are spending it all.
I agree about keeping records. I can show the bills I pay for Mom because its always a check. With her pension money, I keep all the receipts and put them withthe check stub for that month. On another thread someone suggested writing down every thing you do for the person. Cover ur tail.
I agree with that, not every sibling is prepared at the time of need, many live farther away, or are involved in their own life struggles of career or family.
It's not a matter as I see it, of blame for not doing the care. But in situations, particularly if they last years and years, where care is needed by a family member, it is not fair for only one sibling to take on the whole job, leaving no worries at all for the other siblings.
In your situation, it seems you were in a position to arrange your life to include your mom's needs, and as you said, you took room and board from her, so that made it more fair that you gave so much of your time. Good enough. That is part of what I meant by the idea of a Care Retirement Account. Sounds as if you were not personally at risk of great loss during your own later years, so you were in a position to give the care, and when you felt she would not receive good enough care in the nursing home, and you could do it better, then good, you took action and made the choice.
I did the same, I also chose to take care of my disabled brother - but in my case, I felt no sibling obligation to do so - he was my sib, not my mother. 5 other siblings lived far from me, and I was someone who had received help in adult life and when I looked back and saw him struggling at home, I offered to help.
But technically, he was my mother's responsibility, not mine - and I had not finished my own education properly to support myself in my adult life, nor was I married. My mom had him when she was 44, so when she was 64, she was simply unprepared and tired, lived with second husband far from town and had never worked, so she was not capable of helping him leave home and safely integrate himself into the adult world like his other sibs.
I found it interesting to teach him, and when I saw him actually responding positively to my efforts, and when I had full responsibility, I finally understood the day to day difficulties he had with his coordination difficulties - I felt I could give the best help, and I did my best and have no regrets.
As you said, if you ever decided to put your mom into a nursing home at a later date, then you would do so with no regrets, knowing you had already done what you could. Me too, that happened, and by now my brother is in a nursing home, and has an excellent balance of activities in his schedule both inside and outside the home, because of me.
The point is however - the whole family, all the siblings know that at some stage a disabled sib in my case, or an ailing parent will need care,
It is not the financial responsibility of any one sibling, to pay for entire costs of care, and my point is that there ARE costs, and for some, time spent is the major cost, not just the money. Actually, you did what I said in your own way - your plan for some supplement to your own Retirement, came because you took room and board from your mom. It's only fair. That's the point.
Too often, care needs grow gradually, and one sib, who lives closest, sees the needs and recognizes them. Far off siblings don't see the needs so clearly. They may hear of needs periodically, but don't see how often the needs crop up, to them it sounds like a long series of details, they don't follow the progression or decline. They don't see how much time it takes sometimes to persuade a fragile person to cooperate with the caregiver even in meeting their own needs.
Far off observers see a snapshot view - and in many photos, people are clean and neat and smiling.
I did not live with my two youngest brothers growing up, my mother took them with her when she married her second husband after my father died. Living apart, I did not even see the needs of the youngest, because his disabilities seemed a minor annoyance or worry, that I could hear of periodically, worry a bit, then forget, for I knew there was little I could do from far away. And it never seemed as bad as it was, for when he lived at home and my mother made sure he was dressed well, had hair cut, dentist - I thought of him roughly as a pest, who didn't know how to get along with peers - I didn't think further.
Only at 31, when I heard of his major struggles and recognized my mother's age and inability to help, I offered to help, and my mother sent him right down, because he was having so many seizures despite so many medicine changes, and was belligerent.
I had received help with fitting into adult life myself by then, and thought maybe I could help, so I offered, thinking maybe it would take some extra of my time for a few years or so. It was only when I had the full responsibility for his life and care, that I even SAWhow every area of his life, hour after hour of every transition in his day - was full of challenges he could meet so slowly or not at all, that he was quickly unkempt, left out and left behind. In our busy and broken up family, he had only learned to let mom care for him, and he learned to smile broadly to everyone who asked, and say he was doing OK.
Took me the first 10 years to reach him myself, get him to communicate with me, learn his needs, try him in different living situations, jobs, programs, before I learned enough about his patterns and how to stand up for him, so I gradually made choices that steadily helped him. Then 10 years to support the caregivers that I found, vetted, hired and monitored to help him, then another 6 or so to celebrate - then his balance started to deteriorate, and he had to move or drop out because of that, and he was not capable of exploring and choosing places that fit.
Long story short - I never expected to be needed as much as I found necessary to rescue him - service system that people expect to help, in reality is fragmented, usually offer meds for any agitation. The process is not helpful, but often disruptive for younger populations.
I CHOSE to help, and did so more than once, for I saw that I became the one person not fooled by his broad smile and the clean clothes I put him in (otherwise he would have been victimized by street people) - and I learned to intervene positively with him, after repeated struggles through time, but I stayed positive and hopeful and loyal - and he came to trust and grew.
I'm trying to be brief enough here. Point is that not every sib can or should do care. But if a family with siblings is going to be friendly with each other at all, even the far off sibs need to pay attention, or as LuvChrisAl just said, even CONSIDER taking on the care, so they understand that one of their siblings is making a significant life decision, and as a family, they should - if they believe in family relationships - do something to help - and also visit, so the caregiver sibling is not left alone as the only family member who is facing and struggling to deal with a very difficult situation. My family eventually pay me a monthly stipend now, even when the care is over, for I spent so much time during years when I needed to be saving for my own aging years - but I didn't realize the care would take so long - I had to fight for it, for many years, for from a distance, they just said, it was "your choice". But my choice was actually to try to help, not to substitute my disabled brother for a child of my own, or to find that family wanted to be backseat drivers and got angry if I disagreed with their ideas - took a while for me to teach them that I loved some of their ideas, but as the person on the spot managing all aspects of care, I would choose those that fit. They were not ill willing - but they never offered, so I'd have to ask for help, and it took me a long time to learn that I had to notify them of timing and details - work!
Hope this helps bring some clarity here, and I appreciate the discussion!
We all do what we feel we have to do. But none of us should be forced into it. We need to make decisions on what is best for everyone.
Its suppose to say " now at 65 I know I won't be able to be his caregiver in later years"
I do feel bad about this because he is sweet guy. I'm just being realistic.