Mom had a stroke - Many questions - Help!

Hi Anonymous!  Hard stuff! Geez, relationships are just the hardest things.  I was just talking with a friend who did all the care giving for her mom for over 6 years (she died last year), and it seemed that her brother only cared about the money.  It was very hard for her to be assertive with him and she had to choose between what was most important to her, preserving some kind of relationship with him, or fighting for the money that she clearly deserved. I'm just finding that people don't really change easily.  She ended up doing what she thought was right and balanced. He just had no clue of the reality of the situation. 

Someone made a great point in another post about showing just how much it would cost to bring in other help vs what the cost for you would be. That the money is going to last much longer.  Can we talk about the financial stuff without getting into the personal stuff?  I don't know.  What would happen if you asked your siblings if they would be willing to cover any difference in value of your house if you had to sell it at a loss?  not that they would, but to help them understand...  Is this helpful?

Can you be really clear with yourself about what your needs really are?  Not what you need someone else to do, but what you need. e.g.  I need to know that mom is taken care of.  or I need to be financially secure.  I keep trying to express my needs in relation to someone else, but it really only helps me when I can be clear about what I need and then express that.  Also makes it easier to not sound like I'm guilting someone  - like my husband  :>)

Hi Rebecca 

Thanks for your post.

RE: the other post -  how much it would cost to bring in other help vs what the cost for you would be. That the money is going to last much longer.  Yes, I agree it would but if she passes before it's gone it goes to her heirs that have done nothing and I have given up everything. Is that fair?

 RE:  What would happen if you asked your siblings if they would be willing to cover any difference in value of your house if you had to sell it at a loss?  not that they would, but to help them understand...  Is this helpful?

Good idea, worth a try but understand this, if I sell my home and leave my life behind, move to care for her for some amount of time and she passes, they will want me to move out of the house immeadiately so they can get their share and I will be homeless. Is that fair? I have to take care of myself too here and I don't think I should have to put myself in such a precarious position while they again aren't risking/giving anything. If I leave she will end up in a nursing home and I think it would be the end of her quickly. I don't want that but I am not sure I can do this without some security for my future whatever it is.

I know, nothing in life is fair . I'm willing to help care for my Mom for her - but not to the benefit of my siblings that aren't doing a thing and haven't even given a thought to me. None of them would do what I am doing now or thinking of doing but yet they want to know how much I have spent on groceries.  Do you see what I mean?

How can I get some advise or guidance? I need some suggestions.

Hi Anonymous....   No it isn't fair!   I agree that you need to protect yourself financially.  If you were to sell your house, would you buy another one in the new state?  Its important to make sure you have a home one way or another.  So don't leave yourself in a precarious position!   I sure wouldn't want to do that.

I think I would contact some local agencies to help you work through this.  I'd start first with the local area agency on aging (AAA) , and ask to talk to a social worker there.  (See the local directories links on this site.)  I'd also consider a conversation with the geriatric mediator....  someone who speciaiizes in helping people resolve family issues around eldercare.   I have a friend here who does just that and it can be really helpful.  But I'd start with the social worker. 

Have you been in contact with any local agencies? 

Hi,

   I know how you feel. I am in a simular situation with my 87 year-old Aunt. We sold our home at a loss, almost a year ago. We moved into a home she purchased. The way it was set up when the home was purchased was in the event of her death, the home automatically deeds to me and my husband. She is paying the mortgage on this home. We are paying for most of the other household expenses. We had to use an attorney for all to be legal. However, he said that at any point  if my brothers and sisters wanted to sue me over any of it that they could. She has no children. They don't help me on a regular basis either, yet they don't really hassle me about how I run things either. I do worry at times though, what will happen upon her death? Will they be as unconcerned then? They of course are heirs  to her estate, just as equal as I am, besides the house that is. They just don't have to go through all of the stress and heartache that I do as a caregiver. I'm not trying to complain, I've always been that person in my family, I can't turn my back. when I see a need. My heart goes out to you and I certainly relate to your concerns and all of the emotions that go along with it. God Bless You and your Mom.

Hello - I'm new to "blogging" and have always resisted because of the obvious vernerablitity issues.  But WOW!  It's like you are writing my journal!  My father is in an Alzhiemer's ward.  2 years.  I have 8 siblings who are also happy not to be "involved".  My husband and I decided to keep our home which is paid for and I had moved into my mothers house to help her. She is 81, double knee replacement, incontenent, and failing.  My husband has been my rock - he helps me get her out every weekend if only for a ride in the country.

I am the not only the "major" caregiver, but the "only" caregiver.  My brothers and sisters come in a couple times a year to "visit" at which time they are sure to give their full opions about how I SHOULD be taking care of things.  I am my father's legal guardian and financial trustee.  I am mothers POA, MPA.  My husband retired this year; a month later he had a minor stroke (from which he is fully recovered thank God!)  I work full time as an accountant.  THAT is my touch with sanity and wouldn't give it up for the world! 

I have 2 brothers in town.  Both alchoholics.  One on disability with crippling rumatiod arthritis.  Mother feels a need to help support them financially.  There isn't much money to consider; mother sold her large family home in October and put half down on a handicap accessible of which I personally financed the second half. 

The personality dynamics are staggering in ANY family - but here is my problem if you will:  there is very little money involved.  Mostly monthly income of pensions and SS.  But I feel responsible to answer to all my siblings.  I feel judged by every move I make.  If I purchase an appliance for the house, for example, I feel that I need to justify it to them.  So I've just been paying myself.  However, I feel very taken for granted that I have to buy groceries, etc and mother gives "the boys" money whenever they ask.  While it wasn't a problem in the beginning, it is becoming somewhat of a financial burdon.  I always "assumed" that I would be compenstated in the end but I too am concerned about my siblings wanting a "cut" when I sell this house to move back to mine.

I could write indenfinitly, as I'm sure you ALL can about being taken for granted by siblings.  I actually had more than one say "it was your decision".  Meaning, I asked for it.  Well, I guess in a way I did.  And I don't have any regrets.  Mother and I have always been very close and I am enjoying her company.  But I didn't count on these horrible feelings of resentment I have twards my siblings. 

I guess I'm not looking for advise - just somewhere to blow off steam without being analysed by people who have NO IDEA what this is like. They blow in for weeks at a time without asking me, disrupting routine and leaving a mess (emotionally and physically).  I know I should be honest, put my foot down, but I try to consider what they are going through.  I'm just really tired.  Their visits are not helpful.  I am not comfortable leaving while they are here.

Thanks for the space.  I think I'll be back.  God bless each and every one of you for taking on this tremendous responsiblity. 

You're not alone Tired in Iowa, I too am tired in Iowa. I also gave up my home and lifestyle to care for my 81 year old mother. A while back Mom talked about selling her house and using the equity to pay for her care .now and in the future My sisters went bollistic on me and since our relationships have not been the same and never will be. What they don't understand is that if Mom gets hurt and I can't care for her, the home will have to be sold to pay for her care and I will be without a home. Mom's home was in need of a lot of work. I have painted the inside of the house, redone the hardwood floors and try to keep the house up to date so that when it needs to be sold it will get a top $$$.  I have been told that any money I put into the house will not be reimbursed when it is sold, my sisters say that is the price I have to pay for living there. They just don't understand all the costs involved. Some say to have Mom sign the house over to me but still if something happens in five years, I'd still have to sell it. Therefore, now Mom makes the house payement (we have 9 years left) and I pay the rest, her medications, copays, medical bills, food, entertainment. I have been divorced for the last 16 years. The youngest of my three children graduated two years ago so every one assumes I have no life. I have wonderful friends who invite me to do things, but I just can't bring myself to leave Mom home alone. Unfortunately, Mom never made many friends when she was younger and the ones she had have passed away. I have a brother in town who is very supportive and Mom is able to watch his kids before and after school which is good for her. However, she doesn't charge him for babysitting, and I am the one furnishing the before and after school snacks and meals if they are here. He is good about bringing something if I ask, but I don't like having to ask. Plus, I enjoy having my nieces and nephews there and it brightens my day. My one sister can be helpful, but then it is always thrown in my face what her and her family have done. My other sister... Well, if she can handle making a call to Mom once every two months or so, she is doing good. She states it is "just too stressful for her to call Mom" and besides Mom can't hear her half the time. What she doesn't understand is, maybe Mom can't hear her, but she knows she called which is better than waiting for a call that never comes. Mom appreciates things I do and I love her dearly and would not change anything. I guess I would just like them to offer to take Mom for a weekend or a few days so if I wanted to be spontaneous and have dinner with a friend or read a book or do something with my kids, I could. I feel selfish saying all this and like I'm a bad person. I work full time and for the last three years I had a part time to make ends meet.

What I wished they would understand is every time I do something I respectfully run it by Mom. I ask her what she wants for groceries, if she'd like to go out to eat or if she has a problem with me going out with friends. I sometimes feel like I'm a child in those terms.

There have been arguements where they didn't think what I was doing was right and allogations were thrown at me and right now as far as I'm concern, once Mom goes I really don't care to spend any time with my sisters. I love their children dearly, but since their children live far away, they have no clue what the picture really is and my sisters definitely don't tell them the whole story. Unfortunately, my children have seen my sisters behavior and it has gottent to the point that my son doesn't want either one of them at his wedding and the only reason they do things when they are back is to please my mother. It is my kids that call or come over to check on Mom. It is my kids that I call when I'm worried about her and at work and they run over and check on her. I would be lost without my kids, but I dislike the burden I am putting on them. Luckily, they don't feel it is a burden.

It is so nice to know I'm not alone in feel the way I do and that others have smiilar problems. There is no real answer.

Jinxp59 - sounds like we are living parrellel lives! I guess it just comes down to being appriciated instead of judged.  And how much of that is my own personal perception. 

My Dad passed away last month so that is out of the caregiver equation emotionally.  Now its all about Mom.  The day my dad passed she was in the hospital having a total hip replacement.  I ask myself "when will it ever end?!"  Then I kick myself for asking.  Because I know when it will end, at her passing, and that is NOT what I am looking forward to at all! Going back to the family dynamics, WOW!  Who would have EVER guessed that there would be so much drama from the absent siblings?  Of course my mom is tickled pink when they FINALLY come to visit.  And I do enjoy catching up.  But they can't just visit...my brother had a large shade tree removed from the front yard ("it's Mom's house too).  They re-arrange, paint, whatever they want to do "for Mom" and then leave me to complete these often expensive projects.  Like planting a new tree and landscaping ("why do you have to hire a landscaper?  You are just spending Mom's money") oh-you know, it goes on and on.  My husband always quotes, "the road to hell is paved with good intentions".  I say they are paving that road for ME!

Anyway.  Life goes on for us (caregivers) and one thing we will ALWAYS have that the other siblings don't is the time we get with our parents.  I absolutly do not regret moving in with my mom.  Or taking on my dad's final care.  If I can keep my head about me and not let others drive me crazy, I look forward to these next few years with my mother.  Her surgery made a WORLD of difference in her mobility and I am looking forward to spending time outside with her - she love gardening. 

The problems won't go away, but I think if we can keep our feet on the ground and not let outside craziness destroy us, we will come away with some wonderful memories that no lawyer can touch!  (Of course it will be nice to have a pillow left to lay our head on but that's a different problem right?) 

Keep on loving your mom, doing what's best for her now, and try to protect yourself for the future...and pray that your siblings see the light.  If not, pray that they'll leave you the heck alone!  (that's my prayer anyway )  Good luck!

I want to give all of you care-givers a Round of applause and sympathy at what selfishness some siblings & relatives have (Share and share a like) One parent amongst ~ all siblings ~ Human nature to shove responsiblity on to one child is WRONG ~ LOVE is unconditional and the best lessons are learned by sharing responsiblity each one taking his or her turn at total care and not just flying in for a visit ~ How to make things equal out? Every selfish person has an excuse why they can't share in this reponsiblity of taking care of a loved one. You are not ALONE ~ The people who care the most usually get the short end of the stick ~ But you can sleep knowing that you are doing the right thing and have unconditional LOVE ~ Hopefully you have a least one person to support you emotionally when you must go through trials of everyday living with ungrateful relatives that only see the bottom line and have no compassion for you ~ someday those same people might need a caregiver that will be as absent from their lives as they are from you GOOD LUCK & know You are not alone.

When we choose the roll of caregiver we have the best intentions. Our loved one needs help and we gladly step in. When the first sign of upheaval or sibling confrontation appears we wonder what we've done to deserve this treatment. As time goes on we discover that our siblings aren't willing to help in mom/dad's care. We try to justify their decision: they don't live close enough, they have young children, etc. etc. When things start to become uncomfortable we try to 'get through it the best we can'. Then, out of nowhere, it becomes a battle in our own head: why can't I get some help with mom/dad?, why do I have to explain EVERY move I make?, is it really necessary that I explain what I am spending money on? should I tell them that their 'visits' are more disrupting than helpful?, and the questions go on and on and on. I really think that is what makes us crazy. When I finally stood up and made the decision to confront my siblings about what was going on I felt a burden was lifted. I said EVERYTHING I was thinking and made what I expected very clear. When all was said and done I told my siblings that I was in charge. I decided that since they were too busy, etc. to help with OUR parents I would do it by myself. They couldn't just 'pop in' and ALL money was in my control (during their lives and after they died). They had no right to ask for an explanation of how money was spent, what was done in/to the house, what doctors were saying, etc. I took them to an attorney and made sure I had POA and MPOA. At that point I knew I could 'hire' someone to come in when I needed a break or wanted to do something for myself. It wasn't easy at first because my siblings called me all kinds of names: golddigger, thief, etc. However, when they saw that I was making positive changes for our parents they backed off. I got both of my parents involved in adult daycare so I could keep working. It was wonderful. They made new friends and stayed active. I was comfortable knowing they weren't alone all day. I sent them on 2 cruises with a group called Travel Companions. They were cared for during both trips. The Companion sent them home with pictures and memories. When their health declined I didn't feel bad for placing them in a facility that was more than qualified to meet all of their needs. Again, my siblings complained. My answer: OK. I will take them out and move them in with you. Are you prepared to care for them? That ended all complaints. The bottom line to this whole story is this: Don't let family drive you crazy. Make your own decisions based on what you think is best for your loved one and stick to them.

Sounds like a plan that works HURRAY! for you..

You are not the only one enduring selfish relatives. The burden/responsibility is huge. My relatives decided last week to sen in an "aunt" to care for my mom. Now we have 3 people in a 2 bedroom and this aunt sleeps w/ my mother. (She snores loudly and I fear it is adversly affecting my mothers quality of sleep. This is quite frustrating for me because all I ever asked of anyone was to stop in and visit her, take her for a ride while I am at work. Now I have another person taking over everything...I haven't got any quality time w/ my mom since the "intercepter" arrived one week ago. They made this decision without speaking to me, one day I met my aunt that lives 50 miles away and there sat my aunt from Florida. Wow! what a week. Keep your chin up and remember you are the only caregiver and advocate for your mom. Make arrangements so none of the "others" benefit from all your dedication.

I am so sorry to hear you are have these prob. but did any one ask your mom what she wants it seems to be one of the biggest mistakes that family's make when someone has a stroke depending on what parts of the brain is affected she is still in there and my want something other then what is being done and if she cant then it seems to me you need to use the voice the good lord gave you and speak for her and DON'T feel bad you are not doing anything selfish dig deep and BE THE VOICE FOR YOUR MOTHER and yes you are right your aunt should be sleeping on the couch this inappropriate and could be doing some harm

Since your siblings are not involved in the care of their and your mother you should look into hiring in-home respite care for your mother. The National Stroke Association has extensive information on how to care for yourself when you are a caregiver. You are fortunate that your mother has some financial resources, use them to make her comfortable and allow you to return to your previous lifestyle. Your siblings may give you a hard time for spending too much money, however if they are unwilling to help care for your mother they should not protest when you decide to get outside help for your mother. Stay strong and best wishes to you.

I lived with my parents and took care of my father until he died 12 years ago (had to quit my job at the time as he was dying)and then took care of my mother until she had a stroke and died 4 months later, a month ago. During this time, I worked sporadically, and until my sister paid for a live-in caretaker four years ago, I could not work because I was not comfortable in leaving my mother at home alone while I went to work, and local jobs were scarce in my field. Aside from the caretaker, my sister (who is worth millions with her husband and live a life of luxury) did not pay much of the other expenses. When I was not working, I financed my expenses with credit cards and refinancing my home. I did not deprive my mother and provided whatever she needed to maintain her health, eat well, doctor visits, expensive vitamins and supplements, etc. Cost a lot of money. Now that my mother has died, I am bankrupt and facing impending foreclosure. My sister and her husband call me a loser and financially irresponsible. It is so unfair, they were not involved, and only criticize. I was there for my parents 24/7, they didn't provide physical help, and little financial help in relation to their wealth--which I don't mind--but to call me financially irresponsible. I did not ask them for financial help throughout the 18 years of my caretaking duties, only in the last four years did my sister pitch in with the live-in aide. That is the way some siblings are. From the posts, I see it is more prevalent that I had thought. We care, so it naturally falls on us to take care of our parents.

As the distant sibling, let me say that once one has set up control, all they want is constant credit. After reading all of these posts, all i hear is "they shouldn't come to visit", "they shouldn't ask questions about the care", "they shouldn't make any comments as they are interpreted as commands and not simple questions". I would happily move mom here near me , but was forbidden to do that. It would not be considered. I offered to help handle bills, etc. but was told that I was not a POA, so I could not do it (made no sense as anyone can pay the phone and cable bills). I was told I really don't understand the situation, yet mom and I have a close confidence and share good times on the phone. Am I to stay away? This is simply a control issue and there is nothing that will satisfy the caregiver. I have tried. Everything I do to please mom is considered wrong and evokes anger. I give up. Share the responsibilities and give up some of your self imposed stress!! I would like to take care of my mother too.

Hey, distantsibley, send me your address and I'll send you my mom so you can experience some self-imposed stress!

It's too bad this thread came to an abrubt ending. Isn't it sad how some people twist situations to cover there own shortcomings? As many of us actual caregivers know, some of those "distant siblings" or "holiday children" that aren't actually involved, except to serve their own interests or needs, have so many issues of their own they can't even begin to actually help a failing parent. Sometimes their "help" is actually more detremental. They have drinking problems, anger problems, financial problems, problems with spouses or relationships, problems holding jobs, problems,problems,problems. They want to "help" - if it suits them $$$. Frequently they blame others for all their problems and never take any responsibility.

They seem to think caregiving is such an easy job - that shows how little they really know about it doesn't it? I never took care of my father for my siblings - I did it for him. Now that he is gone I don't have any relationship with my "distant siblings" and for me, that is a good thing. I hope others comment on this thread - don't let a fly by the night sourpuss end our productive expressions!!!

I was in the same situation. One sibling had the 'balls' to tell me she had a family and couldn't help. I explained that our mother WAS her family. As it turned out I got no help from either sibling. The other sibling said, "Send her here. There is a nursing home about 5 minutes from me." Mom had no money- only SS income. When she died I got nothing. In fact, I was thinking about suing her husband for all of the money it cost me for her meds, etc. because he gambled her check away. Yes, a really nice guy!! Sorry for the rant, but, I wanted you to know I understand.

I have absolutely no help with my mom except from my husband and children. None of her children will help even when they are asked its one excuse after another so if you truly want to help out you will find a way.Im sure a lot of us with our self made stress could use the help.

Hi, My dad very recently suffered from a stroke. I'd like to know what I could do to help in these early stages. I read that playing music helps, but I also read that too many background noises can be a bad idea. I will try to read to him as much as possible. Any ideas/feedback would be helpful.

Thank you.

Alot really depends on how severe his stroke was. You need to ask the doctors for the FACTS. many will just say "it depends" and "we really don't know yet". If it is really bad and he doesn't have the will or something to live for and he is old don't let them talk you into the numerous medical procedures they might want. Watch them closely and ask questions. Be there as often as you can. Read as much as you can. educate yourself. Yes, I think music is great for any stroke patient and yes too many different sources of noise can cause frustration. Stroke patients need to focus on one thing at a time. Too much at once is sensory overload. If you haven't found out ASK, is he in the hospital? Ischemic or hemoragic? How old is he? Is everything moving or does he have paralysis? \Move each limb is my opinion but you have to be careful. Did he get TPA? is he talking? many people can give you advise but if you want good info, provide more details. I have been through this with a +80 year old. Like they say - use it or loose it. Don't give up hard work will help the recovery but on the other hand, be prepared to help fight a long hard battle. The patient needs to WANT to get better and willing to fight for it. You can do it initially but you can't do it all forever. Be a good advocate, teh staff notices and I think gives better care. Good luck to you and yours.

It was a hemmoragic stroke and my dad is 60 yrs old. He's currently in the hospital (neuro icu). Right now, he's not able to move his right arm or leg. He is able to open both eyes. He's not able to talk yet. Although it's a slow process, I feel like he is progressing. The doctors say its fine to play music, so I do once in a while. I think he likes it. I also try to talk to him as much as I can. He's having some trouble following some of the doctor's commands, but hopefully that will improve in the upcoming days.