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.
I think that reviewing the form weekly can help home-helpers start to list their hours - and the form also suggests what families would have to pay - usually from elder's funds - to purchase such services.
I don't think the form is complete - since long term caregivers learn to prevent difficulty. Since we are the ones left to rescue and plan alternatives if a care plan fails, I found that I developed skills like an Occupational Therapist, to see where my brother would likely fall or break things - and I chose furniture that was sturdy for him, and set up his daily walking path through a neighborhood so that he would be seen if he fell, and I also chose the walk to a local sit down restaurant, not just a day program. And taxi to adult ed in evening. My learned planning skills don't show up on a care services form, and I should think of what kind of format can notice that aspect of the expertise we develop.
But starting to think of the care as a service - even if we do it out of love, duty, gratitude or sense of values - still is very important, for we can feel stronger and openly respected, only if our efforts are more visible, and that takes effort.
Awful way to look at things, isn't it. But, u must cover ur tail in everyhing. TG I have POA. TG my brothers go along with my decisions and we all are on the same page. Other than my DH, Mom will be the last person I will care for.
Re: financial situations - I have observed that it is easy for a caregiver to get screwed financially unless they have things in writing.
If the person you are taking care of is mentally competent - it is wise to have a legal employment agreement that clearly states what they are paying for (ie: rent, food, laundry, adding a wheelchair ramp, doctor visits, etc, etc) and how that is being paid. Do you give them receipts? Do they pay a flat monthly amount? Even if you totally trust that person, it is best to have a written agreement for when they might slip into dementia and the other relatives would be more involved. Even better - have a lawyer draw up the agreement because that lawyer can back you in stating that the person was in their right mind when they agreed, and wasn't being coerced. If the person has agreed to deed you property or their car or anything else upon their death - put it in WRITING. Make sure the deed has your name added to it. It is virtually impossible to prove it after they pass if you have nothing in writing.
And the best time to negotiate this is BEFORE they move in; BEFORE their health gets worse.
If the person is not competent - and your agreement is with members of their family - again, draw up a legal agreement that includes every detail you can come up with. Do this BEFORE the person moves in with you. You have more power to negotiate what is fair to you before you start than waiting til after.
In the case of my friends: One friend cared for her beloved aunt with the grateful agreement from the aunt's children. There was a verbal agreement about her getting some compensation from the house sale when her aunt would pass. But the moment the aunt died, her children refused to honor their agreement and kicked her out of the house her aunt owned without any severance and without much notice.
In another case, the elderly mother moved cross country to live with her daughter. Again, a verbal agreement that the mom would pay for the larger apartment and all related costs. But once she arrived, she refused to pay her fair share and my friend, the daughter, didn't insist. The mom kept telling my friend that she was included in her will, and that her son (my friend's brother) would split the profit on the mom's condo when she died. The brother was amazingly grateful for his mom to be cared for - but after she died - he refused to give my friend any portion of the condo sale. And she discovered that she had never been in the will. Her mom (who had always been somewhat abusive) had just been stringing her along.
So... whether you trust the one you are caregiving or not - whatever is promised needs to be in writing. And the best time to do that is BEFORE you give up part of your life to help. Once they move in, and especially after they die, you have very little power to change it. So get a legal agreement about what they are paying for, any severance payments after they die, any agreements about what you receive after their death (car, furniture, home, severance, etc.) Also any agreements about what happens if you cannot take care of them any more - which could be because their situation becomes more severe than you can deal with; or your health declines; or you cannot handle things emotionally; or.... You would still deserve fair compensation for the time you helped them.
And if you are already the caregiver and don't have an agreement- try your best to get a firm agreement from the one being cared for, or from the family as soon as you can. Put it in writing; have it drawn up by a lawyer; or at the very least, have it notarized by all concerned.
It might feel selfish or petty - but it is not. Most likely, you will be giving much more than what you are compensated for.
It's called a quit claim deed. Any attorney can do his for next to nothing. The house goes into your name immediately.
Take care Bob!
She said "NO WAY!" and begged me to come help. All 5 siblings were furious, They are amazed at how happy Mom is and 4 of them hate me less.
My Dad and my Mom both in sound mind favored me in their will in exchange for my commitment to stay until they leave this world.
I still work part time when I can.
Our attorney expects trouble from the siblings and is ready to handle it. Amazing families we have.
Wish I could take each one of you out to lunch and encourage and hug you! thanks for all the honesty.
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.
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.
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!
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 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.