Which is the best way to get help at home? A private caregiver; or an agency? A Care Manager?

Follow
Share

I need help, fast; and nothing is working. Pop does not want any help at all. I am at the breaking point. We've tried caregivers from several agencies; they come for a day or two; sit and play games on their phones; ignore Pop or have no interest in him; and I tell the agency not to send them back. I am running out of agencies to ask to help us. It is extremely hard to trust outsiders; even harder to battle with Pop to let them in; and I have absolutely no knowledge of how to set up a schedule of what to have them do. Besides the fact that when they do try to get Pop up; he refuses for several hours; and they just stand there. I don't know how to delegate or assign things to do. I am a total prisoner in the house; I can barely leave to go to the store. Pop is getting weak and is starting to fall again; and I won't leave him alone.
I have absolutely no "real" friends in the world; online friends yes; but not a single person out there to even go have a burger with. I can't cope alone any more.
I'm scared to death. Our house is a cluttered; hoarded, 50 year mess; with Pop saying "don't touch anything" and his famous "we'll take care of it tomorrow". Tomorrow never comes; 10 years I have been in the house with him, 24/7; and every box is still where I set it when I came back home. I feel like a guest; there is no place for my things.
I've been off work, permanently; on disability for severe depression, anxiety; panic attacks; etc for 14 years. Its hard enough as it is to even get myself out of bed; I no longer have any motivation; because it seems like nothing matters.
I have no hope for a happy future; I am totally overwhelmed; all I see is that everything has been put on me; and I have no clue what I am doing.
My own talk therapist now makes a weekly home visit; as I can barely get myself out the door; much less won't leave Pop alone when he is weak and falling.
He refuses to get out of bed; I can barely get him to eat. A shower is a very rare event; I can't even get him up long enough to change his sheets.
All his relatives are 3000 miles away. A second cousin came once in 10 years; for 3 days; called her dad and told him we need help. He has offered to fly out; gather up all the paperwork; unpaid taxes; uncashed dividend checks, etc and sort it all out; but he says I must make him a joint Power of Attorney; and he says we are not to go through Pops attorney for it. Pop has a large will/trust; which I know nothing about; nor understand. I know Pop trusts his nephew; but I am not sure if by-passing the attorney is going to leave us vulnerable to lose everything; "if" something were to ever happen; or if I should have Pops attorney hire some financial people to help us. It is a HUGE mess.
I try to do some things; but with Pop completely resisting it all; I give up hope and just go back to bed.
I tried to hire a Care Manager; and right away she brought a fiduciary; who also wanted to be written right into Pop's trust.
I am overwhelmed; I don't know how everyone learns what to do in all these situations; but I am alone and scared and I don't know who to trust.
We are paying out of pocket for all help. Pop does not want to be placed in any type of facility; and I did see that was also in his Trust; that he is to always have help at home.
His doctors say he is not incompetant; so I really cannot force him to do much.
It seems like all I do is nag him to change his diapers; mop up pee around the toilet; follow behind him in the kitchen and clean up the spilled sugar all over the floor every hour when he makes a cup of coffee.
We have Meals on Wheels; and order other food to be delivered to eat.
He's starting dementia; he has prostate cancer; he's in the bathroom every 15 minutes; he doesn't realize he's even wet and has to be told to change his diaper; then he yells and says he's not wet. All I get lately is resistance. He works a little better with a caregiver or an outsider than he is with me. It hurts my heart that our relationship is turning this way. He constantly says he loves me; but being isolated it a pitch dark; silent house; is not love, to me. It's like solitary confinement in a morgue. I did not realize that 10 years had slipped by; while I quietly obeyed his wishes; and waited for "tomorrow". We've been in the house; together; for so long; there's really not much to talk about.
He's got MCI; mild cognitive impairment; and has lost his ability to reason things out; to initiate anything; he even can't initiate a conversation or say hello to me. I hear him breathing at my doorway; but he waits for me to say something; or he just walks away.
I miss the dad I had; we had a good relationship and enjoyed activities together; but little by little; our life has disappeared.
I don't know how to even go out and say "here I am world; I need a friend". How does someone go meet people when they can barely leave the house; and where would I find a friend?
I don't know where to turn any more

This question has been closed for answers. Ask a New Question.
12

Answers

Show:
ANNNGGEELLLAAA!!!! Yes, I'm yelling (in love). Please listen up! You, my online friend, need more help than your dad does. It appears you are being very Co-Dependent on him, and it's affecting your life very negatively. For example, in an airplane, the flight attendants will always tell you to put the oxygen mask on YOURSELF before you put it on anyone else. Why? Because YOU ARE NO GOOD TO ANYONE ELSE until you take care of yourself. I encourage you to do WHAT IT TAKES to get your life back in order. Connect in community, ie. churches, synagogues, etc, etc. Come hell or high water, get to recovery groups (find them online): ie. Celebrate Recovery, CODA, Family Anonymous. As you meet people, you will find answers and connections and life will become more bearable. You CANNOT isolate in a dark, dungeon of a house with an unhealthy father. If you don't take action, you will go down, and, God forbid, it might be before your father does! If he refuses to get out of bed - good - use that time to go get some help for yourself so that you can, in time, more effectively help him. You have to get mad, my dear one, instead of scared. Get mad and take the next right step towards your healing. There is help, hope and healing outside your dark world, Angela. No more excuses. I want to see your next post saying that you've taken a step (small or big) toward YOUR healing. I will be praying for you...
Helpful Answer (2)
Report

I see that on Oct. 10, 2013 you posted that you received respite care ordered by a doctor.

(https://www.agingcare.com/questions/where-sister-been-these-years-of-care-for-mom-162366.htm)

Perhaps you should contact that doctor first thing Monday morning and ask for respite care again.
Helpful Answer (1)
Report

Angela, if I were you I would re read the caregiver contract. MAybe they can;t get Dad to do anything, but our contract says light housekeeping, prepare meals, etc, Have them do that, frees up some of your time. As for the hoarding.. start in one room at a time and do what you can.. he wont remember what he does not see you do.. maybe have the CG take him to the park, or for a walk while you do this. It will make you feel more in control. If he does notice, tell him you are moving things around for his safety. You say he hardly gets out of bed.. take advantage of that to really clean stuff out! I have learned if you LET the CG sit on her/his butt , they will. You are PAYING them, and although it may seem like they are doing you a favor.. they are your employee. Get some kind of work out of them! Take some care of yourself, or you will continue to sink. XOXO
Helpful Answer (0)
Report

LittleBitAngela, my primary doctor gave me this website to use in case I needed someone to help for my parents, or my pets, or for myself.... Google "care.com" and maybe you can find someone to help you.... they are here in the States, Canada and the UK.
Helpful Answer (1)
Report

You are paralized by your depression and just as Pops can't help the progression of his disease nor can you. You are already on SSDI and have been for a number of years so I would say you need to be hospitalized for as long as it takes for the Drs to sort out your medication needs and get you back on an even keel.
Does your therapist realize how very depressed and hopeless you are feeling?
All the above advice is very sound and helpful but I know you are just paralized and can't do it.
Next time the therapist comes ask him/her to talk to your Dr and arrange for your immediate admission to a psychiatric hospital. There is no shame in this it is just the hospital that specializes in your type of illness and employes the experts that you need right now. Tell Pop's Dr what is going to happen and tell him Pops needs to go into some kind of respite facility while you are hospitalized. Pops won't agree but it has gone beyond that point and you are no longer at this point in making any long term decisions untill you are recovered. this is not a case of shake yourself out of it or pull up your big girl panties. You can't do it so acknowlege that and ask for help then try to just let it all happen. All you need to do is ask your therapist for help nothing more for the time being. Once you have been cared for approach an elder care lawyer and have them help you sort out the mess you are both in.
I don't know if Pops needs to be placed or not but the answer is probably he does because you are not able to do the job yourself and reliable help does not seem to be available. How old are you and Pops? Do you have other health issues? This is beyond giving you advice and urging you to take action. Way way beyond the scope of this board. We are all here for you and will lend our support but right now you need professional help so please find the energy to take this first step then let the professionals take over. Blessings
Helpful Answer (1)
Report

Assuming this is a Living Trust, are you the Trustee, or is he as Settlor (maker of the Trust) also the initial Trustee?

If he is, then you're not bound by the Trust untiil he dies and you become Trustee (assuming that's the arrangement).

And despite the provision that he wants sometime to take him for visits, from your description, that's not happening. So he himself isn't adhering to the terms of the Trust.

So you wouldn't be obligated to keep him at home. And notwithstanding that provision, it's obvious from your last post and this post that the situation isn't improving, so you need to be guided by what's healthy for both of you rather than by the terms of a document you did not and could not execute.

I think you need to make a broader sweep for appropriate agencies. It's clear the one you have isn't helping.

I wasn't aware when I first posted that this is the second plea for help. It's time to make some changes, starting Monday; call all his doctors and ask who they would recommend to help. Or start looking at placements. If you have to, widen your search parameters and go outside your immediate area.

Also read Me1000's post "I'm Losing My Mind". There's a lot of helpful advice on coping, setting boundaries, and moving forward.
Helpful Answer (1)
Report

I appreciate everyone's comments; I really do. It's in his Trust that he is to have care at home; even when he cannot recognize people; it says; he would want someone to take him to a park and to visit friends; but that he will always be kept at home. His doctors will not declare him incompetant; so there is only so much I can do at this point.
His doctor just had a physical therapist come to the house; she did a few exercises with him; took a lot of notes; assessed everything. Another physical therapist will come next week for a day or 2. She said he must have 24/7 supervision.
I called the agency we're with at this time; again; and they said sorry; they have absolutely nobody to send; not even for a couple of hours of respite. I begged for a few hours this weekend and they said they don't even have a caregiver who they could send next week.
It was all I could do to hold in the tears while the physical therapist was here; but she said she would talk to Pops doctor and see if she will approve some type of social worker or case manager.
Now its 5pm on a Friday again; and I can't get help.
This is my home; I'm on SSI; I have two old dogs; I can't move. I don't even have a single friend, except the ones I have online. I have depression and anxiety and panic attacks; I can't go find a new place to live and desert my Pop. I'm just in a huge mess.
I've got to find someone; somewhere; to come help us
Helpful Answer (0)
Report

Yes i agree he needs a home and asap i know mum is heading this way so i know how you feel but you have to look after you and the only solution is hes safe and looked after in a NH its a horrible situation to be in as its up to US what happens to them and the guilt of not coping BUT we are only human and sometimes its not what they want anymore its what they need its very tough but its best for him and for you. like you i know i will have no choice soon as everything is left to me and like you i am overwhelmed. My sister came last week for a week i asked how mum was she said "fine". So sick of hearing this as mum runs me ragged and none of my family have any idea how stressful this is.

Ba8lou is right make a date and a plan and get your life back before you get ill your dad will adjust eventually in a NH.

Hugs as i know how hard this must be and alot here will be in this situation soon also!
Helpful Answer (0)
Report

Angela, you need to do three things.
1. Write down a date when you are going to leave
2. Call your case worker and tell her you're going to need to find subsidized housing
3. Take a walk in the sunsine for one hour a day.

You re going to have to distance yoursel from this situation and wait for an emergency to happen. Then dad will get placed. If he falls often, he's not able to be on his own.

If you are willing to get him placed in care before an emergency happens, then do so. But it doesnt sound like you can.
Helpful Answer (1)
Report

Just a comment on by-passing an attorney: DON'T. If your father has any assets at all, regardless of how small, you can benefit from the advice of someone who's trained in that field.

It was kind of your second cousin's father to offer to help but I'd be leary of his demand to by-pass an attorney and hold joint DPOA.

The Care Manager who wanted to be included in your father's estate plans was totally out of line. If she came from an agency, I hope you made a complaint about her.

Speaking to the larger issues though, I think your father has slipped past the point that he can be cared for at home UNLESS he begins to cooperate. But he's established dominance, and probably sees no need to.

I don't think he will cooperate, so you'll have to take the unfortunate stand that many caregivers do. And that's to find an institutional placement, force yourself to get out of that house, and decide that you've sacrificed enough of your life.

If your health hasn't suffered yet, it will.

What you're facing is not easy, but as you said, you miss the dad you had. That person has slipped away and been replaced by someone who needs more care than you can provide, someone who may only briefly recognize the relationship you once had, and someone who has gone down a different path from that of a loving father, and unfortunately it's a path from which he cannot return.

Even if you don't want to leave him, you'll need to get some breathing space just to regain your perspective.

Even if it's just to go outside and sit on the porch, do so, and make a list of what you consider the priorities to be so you can start your new plan of care.

Ask your father's doctors who they would recommend for home care. When they're there, leave and go look at nursing homes but don't tell him just yet.

If you're worried about his falling, get a medic alert. Even if he refuses to wear it, it will be there if he becomes more realistic about the need to have it. This is the part where the caregiver typically gives in - you feel responsible if he falls, but that's not true - you take precautions, provide him with an alert pendant, try to clean out safe passage for him, BUT if he refuses, then you've done all you can. You can't live that part of his life for him, and it's important that he recognizes he can't use your concern to manipulate.

He has established control over the entire situation, over you, and over the clutter. He's going to resist, but he has to change or you're going to end up in the hospital with your own serious health issues, which you already had in that it's easier to go back to bed than try to deal with him.

If you get frustrated and angry because of his lack of cooperation, keep telling yourself this person ISN'T the father who loved you until he began changing and losing cognitive function; he's a different person and you need to be strong to move forward safely.

Good luck; know that there are plenty of people here who've been through and/or are still going through what you're facing. You're not alone.
Helpful Answer (1)
Report

This question has been closed for answers. Ask a New Question.
Related
Questions