I have posted on her week or so ago with my moms history. My dad is her primary care giver and i do all the house work and administer her meds. I also take care of another ill family member. I was just wiped out so i decided i was going to northern indiana where my son and his family live for 4 days just to regroup i guess you would call it. I had reached the point of exhaustion and I hate to say it I was feeling resentment but not sure as to what. I also felt guilt because i still have a 13 year old at home and I am always gone taking care of someone. And prior to my leaving my dad told me i needed to rearrange my life and try to get mom out of the house every other day. I thought what is left to rearrange. I have nothing for myself. I am up at my mothers every single day.
My sister did jump in and help with the house cleaning while i was gone but dad called me every day telling me he dont know what to do with mom that she had fell again or she was driving him nuts. His idea was that me and my sister take turns staying up there and doing the night shift monday through friday. I love my mother dearly with all my heart and this is hard to take but i do not think i can do that. I would not be able to function at all the next day without sleep. They dont have a bed for me and have a small dog that barks constantly.
When my grandmother had alzheimers and my grandpa passed away my mother and her siblings stayed with her 24 hours a day but they also hired a couple family members to stay at nite and during the day. They struggled when grandma ended up in hospital after a fall and they had to put her in nh. She lived 2 months in the home then passed.
My dad says he will never put her in a home and he is adamant when i bring it up. I dont want her there but I feel it is time for help outside the family andhe will not have it. I want to be able to give the best of me to my mother and i cant do it if He is putting me on a schedule on his terms. I get angry then i feel guilt for the anger.
She has a big gooseegg on her head from where she fell. Mom is only eating grilled cheese sandwiches and pudding every day. She smiles alot but cannot get alot of words out. My dad will say in front of her i dont want to put her somewhere and she catches that phrase and will say she dont want to go to nursing home.
She is incontent alot of the time and is in bed all day except to eat. She used to watch tv in her room and no longer is doing that.
I do not know what to do at this point. I have explained to dad that this is the last stage of alzheimers and we dont know how long it will last as he keeps pushing food on her. I told him that from the message boards i have learned that she is losing that hunger feeling.
I spend all together 5 to 6 hrs of my day taking care of family members. I also think dad gets upset that i am caring for another family member and thinks i should give all my time to mom. But i love them all and i couldnt live with myself if i didnt because there is no one else willing to do it.
I needed to vent , Just dont know what to do anymore.
Let me tell you something straight up -- hard facts -- so here it is.
YOU don't owe anyone anything. Your Dad is laying the guilt all on you??? what is he saying to your sister? nothing? Why not?
There is nothing written that parents must accommodate their children. they do need to provide food, clothing and shelter until such time as they can provide this themselves. BUT they don't owe them an secondary education. My kids are both in college, paying their own way through and they have no student loans. If they want it, its there for them. We applied for loans but none came through and no one could say why.
Anyway just like with that Children then don't have to take care of their parents but they just need to stay in touch to ensure that their parents are okay. With your Mother, you are enabling. because you are there and do, your father doesn't have to face the hard facts of what it is.
I had to stop letting my sister spontaneously plop my mother's care onto my kids for her short runs out to the store that turned into hours. Especially during the week when they had school or whatever. PLUS they were afraid of what she'd say to them if something happened to my mother 'on their shift'.
When I stopped allowing us to enable her to not see just how bad it really was, she was able to start seeing that maybe she just can't do it anymore and started to be more open to putting her in a place that would give her the same quality care as my sister gave her but allowed my sister to sleep and get refreshed as she deserved.
Your father isn't able to do 24/7 care and very little people can and do. What is needed is either in-home nurses aids that come in, hospice help periodically, or moving your mother to a facility. AND if there is in-home help, you need to distance yourself even from the other one you care for.
Your daughter will resent you no matter what she says now. You need to spend time with her -- being alone without a parent directing her every move or thought at the age she is will be asking for trouble down the road no matter how good your daughter is.
You say that there is no one around to help the other relative? There's got to be and if not there are places that relative can go and live be it an assisted living place or a nursing home. You should be able to have quality visits but not do the actual hands on stuff yourself.
Look into it. YOU deserve it and YOU must see it for the way we all do.
Please read every word that CaringSister just wrote, and add my name to the signature at the botoom.
You can not and should not and must not spend 5 or 6 hours of your busy days doing things for your Mom and Dad. Whey should YOU do the cleaning? They can hire a cleaning person. They can pay for a nurse's aide to come and be with her. If there is no money they can apply for Medicaid and get all of the above free.
You Dad may be getting too old to make rational decisions - and it may be time for you and your sister to have Power of Attorney over all your parents' affairs, financial and medical.
The qickest way to get someone else to help is to back off. Not just a weekend in northern Indiana (I hope you enjoyed my neighborhood! was it cold enough for you?) but stop going so often to their house. Go once a week. Leave what is not cleaned. If anyone mentions it, say "you need to hire a cleaning person to come in." No reasons, just "I am not able to do it any more."
Try it and see what happens. The world will not fall apart when you withdraw and give your SELF and your daughter more time.
I ditto what Martha and Diane have said. Your Dad refuses to do differently because he is able to do what he wants to do (the impossible) by pushing the burden and guilt off on you. He's letting you carry the load while he remains in his rut. It's so very unfair to you but you are the one that will have to teach them to treat you differently.
I know what I am talking about because I have been there. Mom refused to "put Dad in one of those places". She absolutely refused to go herself, even after her diagnosis. So I had two parent with dementia insisting that if we, the sisters, did enough that they would be ok. Land sakes we tried. What part of me was not totally exhausted was in medical crisis. My brain was mush. I was angry, frustrated, guilt riden, and pretty much a psychotic mess. I was the one "without a real job" so I was the one running back and forth to Mom and Dad's endlessly.
We did try inhome help but Mom ran them off. She fired the inhome nurse and hit the sitter I hired. I had finally had enough. So I called my sister and told her I could not go to Mom and Dad's, that she had to go. That's when mom and dad ended up in Assisted Living. Even recently I have had to put my food down about what I could and could not do because if you let them, others will give the willing all the work to do.
So let them see the reality of the situation without you. If Dad wants Mom at home then he is going to have to deal with it. In the mean time drop off some pamplets or take him to visit a nice facility. If he wants to know why he can't keep her at home, tell him it is because it will take many people to care for your Mom and you are only one person. Give him a choice of in home help or a care facility but tell him that you have exhausted, overwhelmed, and have a family of your own.
It is like a child... at first they will resist you in every way possible but eventually they will come to terms. It's tough going at first but will definitely be worth it in the long run. Your Mom will get much better care, your Dad can visit her and care for her as he can, and you will get your life back.
If your Mom was in her right mind, would she want you giving up your life with your family, exhausting yourself, and feeling guilty because you can't do the work of 20 people? I don't think so.....
I know it's tough to make those decisions..... but they are the ones you need to make
First, drop the guilt! You are doing nothing wrong. Your dad has no right to expect you to take care of your mother. You have your own family and it isn't fair to your child that he never sees you. This disease is destroying your family and your extended family. It's a killer, not only of the patient, but of the family members.
Your mother is at the point where she needs to be in a NH. NH aren't the old horrid places that they used to be. They are now bright caring places staffed with knowledgeable staff that are trained to take care of your loved. They are there for 8 hour shifts so they are fresh and bright eyes. Not like the family caretakes who does 24/7 and is worn out from round the clock caregiving. Your father is being unrealistic to expect you and your sister to give up your lives to take care of your mother at this stage. He can't do alone and he shouldn't expect you to be doing it either.
What if your mother gets up during the night and falls, or turns on the stove or cuts herself or goes outside and wanders off? She could easily do these things at home. There are all sorts of hazards that are there at home that are in her way that you don't see...cleaning supplies., medicines, scissors, needles...Why take the chance when she could be being well cared for in a safe enviroment...
You need to stand by your decision. You can't keep up when you have nothing left to give. Hang onto the towel...we have the other end....and keep posting. That's what we're here for....
i cant say anymore either. it has been almost 2 months since my mom went into a nursing home. my father, brother and i made the decision. it still kills me everyday, but you cant sacrifice yourself or your family. these boards did pick me up with the broom and dustpan. we all feel.
Martha??? Are you sure we are still sane??? There are days I have my doubts
There is nothing, not the disease, the effect it has on our loved ones, or those that surround us that is easy. We just do what we have to do, one day at a time, and know that we are doing the best we know how, in the moment, with the information we have......... and leave the guilt behind!
Thank you all so much for your advice and encouragement. I feel like this is where i can come and get real answers and maybe validate how i am feeling. I relate to so much of what you have said. I am self employed and my dad does not see that as a regular job. As of late I do it as i have time here and there.
I did enjoy northern indiana up by hamilton lake while i was gone,,,, very cold, but just stayed in and enjoyed my grandchildren and son and his wife.
I have 4 children 13,20,26,28.
My cousin is a geriatrics nurse for last 25 years and has worked in nursing homes the whole time and he feels it is time for outside help. He has felt that for along time. So i know there is good places that she could go to. It is my dad i feel that for one he does not want to spend the money they have on nh and another he is afraid to be left in that house without her. And he always is saying to us girls that she isnt going in a home thats what i got 2 girls for. When he says that it is like he is putting the weight of the world on me. He is always telling me he has no life. Well my mother put up with alot of crap from him there whole marriage and i kinda feel he owes this to her.She worked 48 years to support him most of the time and then she got a large inheritance from her parents that he is in control of now. That money should be used to care for mom.
Well I have decided that I am standing my ground and am not staying up there at nights. If he feels thats what he needs then he is going to have to hire someone or look into nursing home. I told my sister I am not backing down on that issue.I will do her meds because I dont want them screwed up. But my mental health and physical health is suffering, I have an ucler Im on depression and anxiety meds. Was going to counseling but there really wasnt time for it so i quit.
Thank you all so much , you have given me the words to relay when he comes at me with the guilt.
I will definately keep in touch,
Good for you Tami!!! Stand your ground and may other arrangements be made. It won't be easy but it will make a huge difference in your life and your Mom's life..... and your Dad's life when he realizes that he has no other choices. We are behind you 100%. So keep coming back for encouragement because we have a truck load of towels that just came in to hold you up with. This is the best for all concerned and absolutely the best for your Mom.
Remember, No guilt allowed here. You are doing the best you can do for your mother. Doing her meds is the best you can do for her. That is the most important thing. Do that and tell your dad that that is all you can do for him. He will need to find a good NH for your mother.
STand your ground. YOur child needs to see you at home. Your family comes first or you will regret it. Your mother wouldn't want you to neglect your children for her sake and you know that! So stand firm no matter what flack your father decides to throw at you-and he will. It will probably get nasty, but you have to do what is right not only for you but ultimately for your mother's best interests.
hang in there tami. Deb has the stack of towels and we will hang and tight to the other end. The power of the mass is a might force.....
Tami, I'm at the tail end of the this thread but I want to give you my support also. With the others here you have a wonderful network of people who have "been there done that".
I'm guessing by now you know very well they do not allow the word "guilt" to enter to any of your decisions. I came here full of guilt about Mom. They sure set me straight on that point. What a burden they lifted from my shoulders. Now I do my best for Mom but I don't give her everything I have. I save energy and time for my family and myself.
Good luck. I think your Dad is going to play the guilt card as much as possible. Stand your ground. Its not going to be easy. It never is.
Thinking of you and wishing you the best,