My Dilema~

As some of you know my dad has been in the hospital for 2 weeks now. He fell due to a mini stroke from what we can tell. He is on the rehab floor now or Transitional Care Unit=TCU. I had a meeting earlier this morning with all his therapists, nutritonist, nurse, and social worker. What I am being told is that Dad will not be able to live by himself anymore . He will need 24 hr care. He will not accept going to a nursing home. In home care...is not feasible at all. That is $7000 a month or at least thats what it was 4 yrs ago when we had that for him for 4 months. Yeah.. thats right. OUCH! My husband isnt comfortable with having him out here anymore. My only option is for me to go live with him. I have not talked this over with my husband yet since I was at the meeting. But I feel backed up into a hole here. I will not abandon him. I have no idea how I am going to do this. I dont feel I am capable of doing this with my physical and mental disabilities. But who will if I dont? I am so scared for him and for myself and my marraige . My husband and I have been working so hard getting back to where we are now. And its such a good place. How are we supposed to keep things togethere being apart? I just feel so lost and confused . I've got till June 1st to prepare for this. They think he will be there till then. I just wish he would tell me it would be ok to go to a nursing home. It would make things so much easier . And I am sorry if that sounds selfish of me. I didnt mean it to. I just want what is best for all of us.

Beth wouldn't social security pay for his in home care? my son's wife and her family went thru this almost 3 yrs ago with her dad. ss is paying for his in home care. maybe you should call them today to try to make some kind of arrangements. good luck

Hey Bethy, just barely found this. Can you ask his treatment team to refer him to the local home health agency for bathing and nursing care and anything else he can get? That way you know that you are not totally on your own. Also, it's not all or nothing. What if you do 4 nights weekly and hire someone for the other three? You could go through an agency or just hire someone and make sure you do the workman's comp and tax thing. Book keepers around here are great at helping with these things.

Please reach out and ask for help now from any local agencies you can. This is a really tough time for you. Take care.

I still dont understand how he is getting this Bebop. Its got to be Medicaid. I have to make sure Dad is ok with it first. He is saying no right now to any in home care too. Thanks for your advice though.

Hugz~
Beth

Hi Wisewoman~

He will have that at first for I think up to 6 weeks is what medicare pays for. After that we are on our own again with the bathing. He wants no hired help. What do you mean about the bookeeping stuff? I dont understand. I am totally dumb about this stuff. Thanks for the advice.

I talked to my T today and he is sooo against me doing this . He is very frustrated wtih the fact that I am even considering it knowing how overwhelmed I am in the first place taking care of his house, his rental homes , his finances, meds , getting him to the doctor, getting his groceries , and any other errands he needs done. I dont want to leave my home here. I dont feel comfortable doing this. But I dont know what else to do that will make everyone else happy.

Beth I know others that have needed constant care and social security paid for it. it is just something you would have to call them to check on.

Social security does not pay for care. You can use it to help pay for care. Is he a veteran? The VA has help for people with service connected disabilities. What I meant about bookeeping is if you hire someone privately rather then an agency you need to with hold taxes and pay in the employer's amount. You also need to get workman's compensation unless someone has an established caregiving business of their own. Please feel free to call me, I can explain in more detail if you wish. I don't have your number so p.m. me if you need me to call you. I would lose my boobs if they weren't attached so don't take it personally. You know, dad can't have it all his way. "Dad, I know you want to come home to your own home and I want to make you happy. The only way that I can do this is with the help of other people to help care for you. My doctor told me I need to take special care of myself and helping you is part of it but I need you to agree to accepting x.y.z". You can tell him that if he does not agree to letting you get some paid help that you will have to follow his doc's advice and have him go to the nursing home. Good luck my dear.

Dad is being released from the hospital tomorrow and is going to a rehab facility in town here tomorrow. I have to drive him there since he is able to walk he is not qualified for medicare to pay for an ambulance to transport him . I know I am going to hear him grumble all the way. I have an option of telling him to find his own way there. But that is where he is going. I am trying to stick to my guns here as best I can and do what is right for him. I just am not sure what to do when he is released from the rehab facility there. He is so po'd at me now because of putting him in what he thinks is the nursing home . Yes its attached to the nursing home but its not the nursing home. Cant get that in his head! Grrrrr! MEN!

So with all this happening. If I may one more time... I'd like to ask all of you for your well wishes , prayers , good vibes whatever you do if you will during this time again. as I sure do need them for strength to get thru this. He is a s strong willed man with hurtful words at times. Yet he can be so loving and caring when needed. Makes it soooo frustrating !!! THanks again.

Hugz~
Bethy

Once he is there and realizes it is not a nursing home I think he will be fine. Pat's mom liked it so much there she did not want to leave. Good luck

I had a meeting scheduled Monday but due to my being sick and all I cancelled. I have it rescheduled for Friday now. They called me today. He is not making progress. We are going to have to figure out where to go from here now. And I have no idea what to do. Dad will be there. Its going to be heated I know that for sure. I can feel myself tensing up already .. I dont want to be there, I dont want to go thru this.

((((((((( Beth )))))))))

Is there anyway you could conduct it by phone so you won't have to be there in person? It might give you a safety net.

Hugs,

Jan

Jan Since I am DPOA no.. I have to be there for decision making and signing papers etc. It all goes along with this sort of thing.

Beth, Try getting a hold of your states Area Agency on Aging. They can help getting you information. The HomeCare program is set up to help families keep their relatives at home. They can offer homemaking services which will go to the store for your father or help him with his house work. Some services will also help with personal care ( bath ).

There is also a Family CareGivers program which offers support groups for yourself dealing with everything going on. Sometimes it's just helpful to talk with others going through the same thing you are. They can also offer respite services were they have someone sit with your father for you to get out or away for awhile.

Might also look into Home Delivered Meals or also called meals on wheels. That would give him a noon meals if he's at home.

Just look up the website for Area Agency on Aging for your state. If you have any questions or need some help find out who to talk to just send a PM. I work for the state of Ky's AAA. So I don't mind looking up more information for ya if you need.

Lisa

http://www.bradd.org/Aging1/index.asp

This website also has a link to the national aging website. Which is under the U.S. Department of Health and Human Services.

Thank you Lisa!!!!!! Got it bookmarked and found our PSA too! I will be asking questions when we have our meeting . I think they will help us set things up . Although I am hopeful he will decide to stay there, I dont think it will happen. He wouldnt make it that easy on anyone lol! Stubborn old fart! lol. I am writing questions down and all that good stuff. Trying to get as prepared as possible. Its going to be a tough day.

You are more then welcome Beth.

Stubborn old farts, I know them soooooo well.

I hate to say it but a lot of hospital and rehab social workers tend to get lacked and not provide patients with the information they need. Which is their job. They tend to go the easy route and tell you to just do nursing home placement. There are services out there. The best thing for you is to be informed of your options. If your father is in his right mind ( no dementia or alzheimers ) he can say weather or not he wants to be in a nursing home or not. And then that leaves you in a hard place.

I hope everything went well in the meeting. Let me know if you need any help with anything.

Lisa

He does have dementia and at the hospital this last time they said something about alzheimers now too. But that alzheimers cant be dx'd till they can do an autopsy? I dont think this family will let this social worker get laxed lol. Or this daughter lol. I do appreciate this info you gave me though.

Yeah that is the only way for sure to dx alzheimers. A great test is to ask a patient to pick up a piece of paper off the floor, then for them to fold the the paper 4 times and then set the paper on a table. A person with alzheimers is unable to do all of these steps. They are unable to remember each step and will get frustrated with it.

Ok this isnt funny but it is... I couldnt ask dad to do that cause he would fall over .. like a rolly polly lol. Hey trying to look at the bright side of things here ok? lol

Well all said and done . Dad is getting his way. I knew he would. <<< thats just how it was.

She and the doctor( who is my second cousin) talked to my dad today. They told them that it was out of my hands that he had to have 24 hr care whether he went home or stayed there. If he stays there.. he will be moved to the nursing home part. I feel so little for doing this , yet i know this is what needed to be done. And I know he is hating me for all its worth right now. I havent seen him yet since this talk with them. I am scared to go out there. But I know I have to. I hate being me right now.

(((tryin))) Please don't take the guilt you feel he is placing upon you... it isn't yours, don't own it. As our parents age, and we are forced to make decisions for them (sometimes because they didn't plan , couldn't make those decisions themselves) there will always be situations where there is no "good" answer. We choose what is best... and that includes for us, too. (It has to, as we are involved, and if we are to continue with any real caring, we have to factor that in, also.)

Stay the course... do your best, and apologize if you want, but place the "situation" as the reason, not your decision. TC

If I dont lose it this week ... it will be a MIRACLE!!!!!!!

Dad called me this morning from the rehab center DEMANDING to be took HOME!!!!!!!! And if I didnt do it , he'd find someone else to do it.

I couldnt believe what I was hearing. I mean other than the meeting yesterday with his social worker/ case manager and doctor he's been treated well ... very well. I went the rounds with him today. Finally I got to the point where he said they said I had to get out of here today my time was up. I said dad nooooo... you've got till this coming Friday . He didnt want to be doing the private pay. AND he still thinks he is going to get to go home by his DEMANDING to next Friday w/o the 24 hr care. I think he is just trying to get his last hurrah in . I felt so bad. But what do you do? I feel like I am all over the place. So much more I want and need to say.. just cant right now. I havent been able to stop crying since yesterday afternoon basically. Well i've stopped .. but its been an on and off thing constantly ya know? Hope you guys can hang tight with me here. Sorry.

Bethy

Beth, I find it hard to find the words in response to all you are going through. It seems like more than one person can handle, or should have to handle. You are only trying to do what's right for your dad and his care, and you must also do what is right for you. I am here for you, and I care very much. You are such an incredible person. Please take good care of yourself right now, and don't forget I am here for you!

Love and Best Wishes,
Zen

Stay the course.... try not to get into a feelings war... breathe... yes it is so very hard! Try asking him questions back rather than fielding his demands... is there a reason why (you dad) he won't listen to the what the doctors are saying? Wouldn't (you dad) he have made (me) you listen to your doctors rather than your own upset feelings in any similar circumstance? As we age, we have to make changes ... our bodys begin to wear out and changes are made to help keep us safe and sound. (Don't you dad) Doesn't he realize how much (I) you worry about him and would worry even more if...

Can you find it in yourself to reword - rephrase what is actually happening? This is definitely a time to stand back and gain a different perspective if at all possible. Throughout life we have made difficult decisions, many made not based upon short term happiness, but long term benefits. (A child screaming against having a vaccination )

Hi Bethy,

When I read this post, it brought back all the things I went through with my own mother just about 1 1/2 years ago. She wanted to be in her own home so bad, I think she manulipated everything to get her way.

I know you have probably read everything I went through with my Mother. Initially, I tried to find someone to stay in her home with her. Then came the RN & I am sure you remember that trauma I went through. The other issue that has to be looked into is whether the house can even handle the daily care that is needed. I know that my Mothers toilet couldn't handle all the messes that had to be flushed. Her laundry couldn't handle the level that was required. When I finally had the perimedics take her to the hospital after being OD'ed by the RN, I told my mother that there would be no chance of her going home again. He house rejected her because of the overflows that happened.

If I had known what the Dr's & social workers had told my mother before the RN got into the picture, she never would have come back to her home & the RN would have never been in the picture. The worse part of it all is that I resent my mother & am embarased to have the feelings that I have for her after she died. I hate the situation she put me into because of her desire to be in her home. She never thought that what happened could happen to anyone that wasn't rich, but it did. The worse part is that they don't realize what they are doing to us, the people who care about them.

Use your best common sense, & if the your dad needs 24 hour/day care then he belongs in a care center. They aren't anything like they were in the past. As a matter of fact, if my mother had been put into the nursing home that she ended up in, she would have been much better cared for & I would not still be dealing with the nightmares & horrible memories that keep haunting me.

Your father needs to realize that he is not the only one in the center of the universe & he needs to know what the options are & what the consequences are for each option. With dementia/altzhiemers it is hard for them to think logically, but it never hurts to try. Don't hide from him what would happen to everyone around him if he insists on being in his own home. He needs to know how it will effect you & your own family life. Just be honest with him & don't try to hide the truth. I know for me, the whole last 6 months of my Mothers life was nothing but lies by everyone involved with her to the point that hospice care wasn't even brought into her life until 5 days before she died. It is important to talk to his Dr's, social workers, therapists, etc. to find out what care they know he needs & don't let him pressure you into anything else. We as children have to be as tough with our parents as they were with us when we were growing up.

I know this is a very tough situation to be in, but you need to do what is best for both you, your family, & your Dad.....no matter what he wants. I messed up with my Mother & learned from what I did wrong. I am having a hard time forgiving myself & can't forgive my Mother at all. Sometimes it seems like whatever we do is wrong, but there is usually a best choice when we work through our options & listen to the caring people that have been caring for him.

Take care of yourself & your family....talk to your father about the options & the outcomes...that way, he will understand the logic behind your decisions......like I said, be honest with him.

Debbie