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I guess it's true when I read that "your not alone" because everyone of these stories sounds just like me. I am the middle child out of five and have been there for my mother since my dad passed away four years ago. She is in a ALF, I live 45 min. away, take her shopping, hair salon, we sit at the water front and feed the birds, etc. I have been the one to take her to all of her doctor appointments so I know everything that is wrong with her. Three of the other siblings have pretty much nothing to do with her and the other, my older sister who lives in NJ only saw her for four days in the last year and hardly calls her. Now she thinks my mom is capable of living on her own so she is constantly pushing to get that done, yet she doesn't want mom to go to NJ. It will be up to me to find an apartment, pack, and move and then do everything in between after she gets settled down. At least the ALF is there for mom, she is safe, has plenty of activities, friends, shuttle to Walmart and doctors. Mom is 83 and is in early, early stages of dementia but my sister thinks mom is like she was ten years ago, she is not. I can't convince her any different. I hope this doesn't happen. I too feel like when my mom passes on I will not have anything to do with the rest of my family again, I don't need them now, I won't miss them later. We have never been the "normal" family, the kind that I always wanted, the kind that takes vacations together, gatherings at holidays, etc. I am so tired of all of this, I feel sad most times, can't seem to laugh much, it's crazy. Just wanted to get this off of my chest.
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I find it a little hard to swallow when comments are made like "maybe your siblings find it difficult to see their loved one with an illness" and "you may be the stronger one" sorry to sound a bit mean, but i think its a cop out. I as my mams main carer am certainly not the strong one, and I cry every night when I think back over the day of what mam is going through, but I dont turn my back on her, i believe however bad or difficult my life seems mams is worse and she is the one that is vulnerable and needs her family.I no in a perfect world all the family would share the care of their parent, but we live in a far from perfect world, the excuses made from family members who dont mean nothing to me and i can totally understand barbs feelings towards her siblings.
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Actually, those phrase "your siblings find it difficult to see their loved one with an illness" and "you're the stronger one" and "they don't visit because they don't want to see themselves in that position one day", etc...similar phrases pisses me off! I agree with you totally - it is a cop out. They just don't care and are sooooo glad that We are the ones stuck with The Problem.

There was several points in my life when I just wanted to disown most of my siblings. I have suffered, vented, yelled and cussed them privately. In person, I have told them what I'm going through and need help. It took me YEARS to get me where I'm at. Before, no one helped physically or monetary. Now, I have one sibling paying our powerbill, and 2 other brothers giving me money for me (not parents) and 1 sis who helps on Saturday so that I can take leave from parents.

I still wish I had PHYSICAL help!

I also think that it's such a shame that my siblings don't have a conscience when it comes to the parents. But then, I don't blame them because we had a very bad abusive childhood. Too bad 2 of my siblings are in turn abusive to Their Family. And from what I hear, Their Kids are in turn being abusive to Their Kids!! It's a terrible cycle....I'm a true believer of what goes around comes around. One day, their children will treat them how they treated our parents.
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So many of our stories sound alike. When I tell people my story most say " It always falls on one sibling" What does that mean? I don't remember signing a contract to be a caretaker. I don't mind doing most of the work, but wish I had more breaks. Excuses are like Butt holes. Everyone has them and they all stink!
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You know, I have a friend whose mother became bedridden for years. She was the main caregiver. But her siblings each took turns watching mom. I remember envying her sooooo much! Her mom finally died this year.

I have an aquaintance whose father had Alz & a stroke. When he became bedridden the son staying at home became the main caregiver. But the sisters here on island took one day as their day to watch. Those in the states, sent money to cover their share of having a paid caregiver. I envy my aquaintance too!

So, I always wondered what was wrong with my family. When therapist told me this past June that a high % do not have siblings helping, I didn't believe. Then I found this site. My goodness! He was right!

On my very first question for help, I was told straight out that our siblings have a Right Not To Help. It was hard to accept - but I did. So, now that we're done venting on our siblings, it's time to Act on Our Own to solve "our problem" with caring for our parent. We go solo among the family. But we have friends on this site that gives us very good advice and all the encouragement we need to succeed (or atleast Handle) our parent on top of our health issues. ... 8-)

P.S...I find that when I harp on my siblings lack of help, it really depresses me. I really don't want to go down that road again - too soon from the last episode. So, this will be my last comment on siblings lack of assistance...(until I get angry again and need to vent!)
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Sallie, I too don't recall signing a contract. But it landed on me by default because I wanted to stay and help dad with mom. But...even so...family should help each other...Guess watching all those Brady Bunch, Partridge Family shows made us believe we should have a family like that. Maybe we should have watched more of the show: What's Happening or All in the Family! This way, we don't have this expectation that family sticks together....
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Lol, Book... We should make our own show or write a book about all of this. I see a best seller here!
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Aahh..Sal...best seller ONLY for us caregivers. Normal people would not understand. They will think we're exaggerating. They wouldn't get the humor of the show! .. ;-)
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Book, Sal there is a book out there called "They're Your Parents Too". I had read it and, of course, it made so much sense to me. I loaned it to my SIL and her claim is that it is too harsh. Too harsh?!? I said, No, it's very telling! This coming from a woman who took care of her father who had brain cancer. She screamed and yelled until she had help from her 2 sisters, my brother and her sons! But, the book is too harsh! LOL Regardless, I had a wonderful weekend off! Mom told me all at the party asked where I was and she said I needed a well deserved BREAK. Everyone understood, meaning other guests, not my bro! I feel I'm going to be taking breaks more often. I feel good and ready to continue.
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It's funny how she was a one-time caregiver and now she doesn't see that you're going through what she went through. With regards to her saying that the book is too harsh - I think she KNOWS in her heart and mind what you're going through but has decided that it's not her problem. By reading the book, it tweaked her memory/conscience and so she reacted that way and said it's harsh.

Well, I'm glad you had a good break! Yes, while your mom is still independent and doesn't really require minute-by-minute supervising, then you should get more breaks. When's the next holiday or birthday that you know your brother will be celebrating? ;-}
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Sallie, I know how difficult the situation can be and it is good to be able to sleep at night knowing you are doing the right thing. That being said, I believe we have to take care of ourselves first. Check out local resources for what may be available to give you some free time. My Mom was very upset in the beginning that I had a "stranger" coming in while I ran errands and went to Bible study. We all need our own time. You are doing no one any favors in giving up your personal life, marriage or whatever to care for someone 24/7. Our unhappiness and stress carries over to our caregiving and affects the very one we are caring for...they sense these feelings. God bless and good luck!
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LOL I was thinking the very same thing! When can I schedule my next BREAK! I'm really going to try as I feel rejuvenated! It is so necessary for us caregivers to have a break! I don't believe it's asking for much and we all deserve it! In the packet for My 2nd Home, they give a copy of Caregiver's Bill of Rights:
1. You have a Right to your own space, a place to relax; 2. You have a Right to time for yourself; 3. You have a Right to ask for Help; 4. you have a Right to say "NO"; 5. You have a Right to talk with others for support. Relationships are both giving and receiving; 6. You have a Right to take care of your own health; 7. You have a Right to make mistakes, to be an imperfect person; 8. You have a Right to change things to make care as easy as possible for yourself; 9. you have a Right to rest and relaxation; 10. you have a Right to your feelings whatever they are (tired, frustrated, helpless, relieved, grateful, satisfied or a combination of all of these)!; 11. You have a Right to a satisfying life, too!
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Did your mom enjoy herself? If she did, good! As caregivers, we need to Encourage our family to help us (not demand for it). One way is by giving positive feedback to bro. If your mom enjoyed herself, you can text your brother that mom really enjoyed herself. Then thank him..a simple "Thanks!!" would do. He would get the drift and feel good that mom enjoyed herself. Then when the next party comes up, he will remember and it won't be so hard for you/mom to have him ask her again. This is what I have been doing with my family. It took YEARS but as you can see from my earlier posts, that I'm finally seeing the fruits of this slow and steady work. It's just that we need to give Positive Reinforcement to fam.
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Yes, mom did have a good time! Yes, that is all that matters! I understand what you are saying but, it just kills me! Funny thing is they didn't even pick her up! They had my SIL's cleaning lady come and pick her up and drop her off! LOL My mom has met her once or twice so, it wasn't a total stranger but, it's so ridiculous.
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Swallow your anger and pride. Remember: Break! Break! Break!... ;-)
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Laughed about them sending the cleaning lady!!! Gee Whiz, it's his mother, her mother-in-law!!!
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I live and help my mother. She has alzheimers, diabetes and other issues. My sister has power of attorney,and she lives out of state. Am i considered the cargiver,if I cook,clean give my mom her meds amongst other duties that im called upon. My sister has it blocked that I cant even talk to my mother doctor. I can get information concerning my mother health and well being. This includes obtaining her medical records. Im unemployed with no income. Is there anyway I can recieve income. Who do I talk to or cand someone give me some resources.
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I had forgot to mention that my sister has breast cancer. And had both of her breasts removed about 2 months ago. Eventhough she isnt here in the same state to see my mother health drain her daily due to her alzheimers and her other ailments. What can I do?
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Chillwill2, get to a lawyer for a free consultation for advice. You as he caretaker should be the POA and if she doesnt want to give it up, tell her she can take care of your mother . It will work, I guarantee it. A caregivers contract is in order here, for you. Does your Mom own a home or assetts, was your dad in the service? Do you know how much it would cost to replace you, your sister needs to be put in her place.
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The caregiver's contract is essential - you and everyone in the family need to have it spelled out - if an aging parent can pay for care they MUST morally do so - it is grossly unfair to put the burden of caregiving unpaid on one sibling but I've seen this happen when the parent wants to "preserve their money" .So insist. If the siblings will not go along with a fair contract, then (after checking any legal considerations re abandonment, etc.) explain that you are not going to do it anymore and what do they want to do? And walk. No one has a right to abuse anyone else. However, did this idea get started?
Now, I've seen situations where the siblings disagree about how an aging parent is to be cared for. The case I'm thinking about concerns a wealthy woman who could well afford a good assisted living facility. But she wanted to stay at home and talked one sibling into going along with this and giving up a normal life. The other siblings refused to get sucked in (the parent's serious health problems would have been difficult to deal with at home) and there was discord. In that type of case, I think the parent had a duty to go into assisted living, or to pay for having her needs suitably covered if she stayed at home. I don't think the siblings who refused to be swallowed alive were wrong in this, bacause decent assistted living was an option in this case. I think the parent was playing the siblings off on one another. Provision of basic care for an aging parent is a responsibility for all the children, but how that is going to be done is open for discussion among them. The parent's preferences are NOT the controlling factor.
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I agree with the caregivers contract, having one myself, and do "walk" if you dont get one because it only gets worse! Remember you have to get at least $15 an hour and pay taxes, which brings it down much lower. Also you willl be increasing the heating, electric, food, etc bills also not to mention clothing, diapers and pads, etc, so keep that in mind. Be Strong and persistant, it WILL pay off if you do. Keep in touch.
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my older sister is away every weekend for fun at a cottage, enjoys exotic vacations and lives a very posh lifestyle....I am left to take care of our mother because she cant be bothered since finding out our mother is leaving everything evenly divided and would not give her total control of the estate and hand over all her money now while she is still alive....when she was sick I phoned her every day , now that I am sick and need help my phone has not rung once...when our mother passes I will not notify her and I have no intention of keeping contact afterwards, and it is not likely I will attend her funeral if she pre-deceases me
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I have to read that book, but you're right about people thinking it's harsh. The truth hurts so they chose to turn a blind eye. Shame on your SIL for pretending not to remember how hard it is. Glad you had a nice weekend. Hope they're are more in the near future.
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LH about that book you mentioned..I read from the reviewers. I don't want to over-read a lot of books on caregiving. A reviewer mentions several times a middle person to help negotiate the family. Dad and I had this with mom in the very beginning with my oldest brother and mom's doc. Doc emphasize it's going to be a long hard road and the importance of all the family helping. Ha! It went in one ear and out the other of bro! I took it to heart and did not move out but stayed home to help dad with dad.

There's also a book that I've seen mentioned several times on this site. I ordered it a while back (orders take sooo long to get here from the states.) Has any of you read this book? nancy lace, etc: The Thirty-Six Hour Day. I sure I like it. If I can't read the first couple of pages of a book, I don't read it.
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Sorry about the typos. Dad keeps talking and talking. Hard to hear my thoughts...or the Tv. I meant help dad with mom....and I hope that I will like the book that I ordered....
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Book ... Yeah, I know. They were too busy to send anyone to pick her up! Not even her grandchildren! So disrespectful!. Next party is at SIL's cousin's house in a couple of weeks. I've already said I won't be going and that I would explain to the cousin why I won't go. My mom has said she doesn't want to go but, we could go over before the party. Better idea as this woman and her family have been nothing but respectful to mom. Took mom to the doc today. Not so great news. He has upped her chemo dose. Follow up in a month. Does it end?
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No it will not end...it just keeps going on and on...that I even started a question thread about it being a prison taking care of parents. You're going to be in some rough road ahead. Upped the chemo dose...this will make your mom sickly won't it? Not wanting to eat/drink and tired of throwing up. I think there's a way to help minimize these chemo side effects. I had always thought you just had to take it "as it is" and hang in there, suffering. But there are ways to minimize the effects. Is your mom so far handling the chemo's okay?
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They started mom on a very mild dose. The reason he raised it was because some of the tumors reappeared. When she first had cancer 10 years ago, she was treated wth full blown chemo (2 types). She lost her hair but, really didn't feel nauseated. Then, when it returned recently, it came back in the form of a rash (who knew?). I had to apply Aldara cream on each of the tumors. She did very well and it cleared up for a couple of months. Now, it returned and they had her on a low dose of chemo (pill form) and just raised it due to the reappearance of these tumors. She's been a real trooper through all of this! Thank goodness no side effects! I do not intend on telling the family. It will be their loss God forbid anything!
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I'm feeling very down at the moment. Sooo tired. Plumbers came today..took most of the day to replace the shower pipes and install new knobs (now looks like a hotel style). Stayed home the whole day hearing dad's mouth just going on and on and on. It's 930pm and he's still going on and on and on....For the past couple of hours, he's in the "accusing" mood. Sorry, but I became disrespectful and just told him straight out that I didn't care. No matter what I say, he will believe that I wronged him. So, I don't care anymore. Just sooo tired. I will need to change their pampers now and then clean mom's trache. I think I will skip cleaning her stomache tube. I feel so exhausted.

I will write to you tomorrow - hopefully I would be feeling better. If you don't hear from me, then I'm still feeling depress. Later, okay, LH? Thanks....
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LH, I have this great fear of cancer since I was in junior high (middle school). Because of this fear, I was never tempted to experiment with cigarette or drugs. It didn't help that as young as that until now, people would tell me that they knew a "karen" who died of cancer - wife, daughter, etc...Total strangers would just volunteer that information. I'm a believer that if you believe in something enough - it will happen. So, I try sooo hard not to focus " Karen = Cancer". I even went and bought 2 books on cancer - one for the patient and one for friends/family on what to say to people with cancer. I received it and put it on the shelf. Fear of cancer. That's why I asked you about your mom. I figured if you talked about it, it won't be such a big scary word.

Doesn't help my 10 yr old niece died of bone cancer, and a friend just last month died of cancer, and I have several friends fighting their cancer. Get the picture? You come visit here, and you see a lot of women with the scar on their throats. Thyroid surgery. That too is very common here.

So, with that said, how are you doing? And your mom?
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