Why are outsiders so quick to suggest you put your parent in a nursing home?

My father is in the advanced stages of Parkinson's Disease with dementia. I've just been told that the funding that helps pay for in home care for my father is being cut/eliminated. My 14 year old daughter & I live with my dad as he needs constant supervision and help with daily hygiene and care, meals, everything. But I work full time and have had a caregiver home with him while I'm at work. After work & weekends it's me. For the past 2 years he was fortunate enough to get in this program from an outside agency available to "qualified" VA patients that helped pay for the caregiver while I was at work. He only has his SSI and we only had to put about 10% out of pocket for the caregiver and the rest went to his other medical expenses and needs and I pay for everyday/everything else for the home.
My dad is waiting a "decision" for a claim we submitted to the VA to have him full service connected. But until that is finalized, that is not an option to count on.
So now that this program is gone, at the end of Oct., I have been scrambling for ides... I will talk with my boss about working remotely via laptop access; or pay the caregiver out of pocket for the mornings & I work 1/2 days using my leave time to the 1/2 I'm out every day (until that is depleted); or use my leave time for full days until it is depleted then go on a leave of absence, which is my last resort because that would leave me without any medical benefits for myself & my daughter.
I've run this past my 3 siblings, a few "friends" and spoke with one of his dr's and his social worker. It just astounds me how outsiders are so quick to tell me to put him in an ALF or a NH. These are even more expensive than home care. Plus with the dementia, if he has too many "BAD" days, they will ask me to remove him. Then what? Besides, when I first started taking care of my dad and had NO CLUE where to begin or what questions to ask about care for him, I put him in a "specialized, secure" NH to get resources going, he escaped 3 times out of their “secured” wing, and he was literally out of his mind at that time due to medication overdosing/under dosing & too many meds, you name it. If I put him in a NH/ALF now, I will be getting those phone calls again. Those are not the kind of calls you want at 2am.
But how quick and easy it is to say to put your loved one in a NH/ALF when you don't even get down and dirty in the trenches. I totally realize caregiving is NOT for everyone. I get that, but to just dismiss someone because it would make life easy.
Whew… I needed to vent that out. Too much stress right at the moment. I love my dad very much and until he’s bed ridden (I know I can’t do this & would need outside help then) he is staying in his own home where he feels comfortable, familiar and is in his safe haven.

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Top Answer
I had A LOT of that when my husband first developed dementia. I think the reasons included:
1. They are genuinely concerned about your stress levels and fear you can't be objective about that.
2. They fear you are acting out of "duty" or "guilt" and they want you to know that it is OK to make a different decision
3. They are expressing what they would do (which might not turn out to really be what they would if faced with the situation).
4. They are clueless.

I think that most of my advisors fell into category 1, but it was a mixed bag.
Unfortunately some of us don't have the resources or capability to do the job. I sat at my mothers bedside for 2 1/2 years, ended up having to withdraw all of my 401K, and she went peacefully about a year ago. Now my Dad is facing not being able to walk and dementia, I had just gone back to work only had 6 months under my belt so I hadn't much money accumulated when this happened in January. I'm 5'3" 90 lbs. broke my back in a car accident in 07 and have done the best I could for as long as I could. He only has his SS check and no VA benefits. We are broke so I had no choice but to put him in a facility for 100 days, now his coverage is up and he's back home and worse than he was before. Even tho I made sure he was well taken care of. There are 7 children in this family and unfortunately it all fell on me, my brother and sister in law is here this week-end and she said, "she had no idea how hard it is" and she's a healthcare worker, she does this for a living. But as she now sees, It's different when it's your parents. I think some of us really don't want to do it at all, but I have nothing left and neither does he, we are struggling to hold on to his home. Long term care in this case is a "has to be" if we are going to keep anything we own. I'm hoping if we can get him at least walking again it will be more manageable to have him home. It's not a decision that was made lightly, and I am constantly watching over him and his care. But we have to eat and have not found a benefit that will help us out, due to his SS, we have not yet found the right program, but I am continually searching. Hope that helps you understand, sometimes you just have no choice, at least temporarily. (I know that's an oxymoron, long term for a temporary time.) When I find the right program, I will bring him home. In the meantime I will work my butt off and be there all I can.
almaangm and syns10, what about Medicaid? Either for in-home care or for nursing home?
We're working on it, but the nursing home, sent me home with all their paperwork, and they had no idea. I was going thru the folder one day and called them and told them I had paperwork I didn't think I should have. Sure enough they were supposed to file the paperwork I had and give me the Medicaid packet. Medicaid requires 90 days for approval etc. (I have no experience with this, and thought they were doing their job on the paperwork end). So now the insurance co. in working diligently with me and we are trying to get medicaid in place. Say a prayer and hopefully that will be at least part of the answer. There is so much more to this story, but it's off topic. Let me just say they messed up the paperwork all the way around. Fabulous nurses, but the administrative staff is horrible. I have been his POA for 3 years and for some reason 3 days before they released him they revoked my POA. I am now having to reset everything back up. I can't even get into the bank account. I think we've almost got it worked out, but it's been a horrible time consuming mess. I appreciate the suggestion and at least the insurance Co. is aware of what they've done and they are trying to push things thru faster than normal. If we can still get the medicaid approved it will definitely be a first step and we'll have to see where we stand than. Thanks again and like I said we're working on that. Say a Prayer!
If it is any consolation, I paid an elder care law firm and they screwed up the paperwork, delaying our application. Hang in there! The administrivia will eventually be behind you, you will know where you stand, and make solid plans!
Sometimes the people on here are SO stressed out and ready for the rubber room, that the suggestion is made to put the parent or whoever under someone else's care. It's hard to differentiate between someone just wanting to rant for awhile, or actually needing permission from strangers to do what they are afraid or unwilling to do. It's a crap shoot knowing what the person need or wants at times.
almaangm, I strongly encourage you to pursue working remotely. I have been doing it for about 4 years, and it makes a huge difference in my ability to keep my husband at home.

Go to your boss prepared with a plan. Sound professional and responsible, and not desperate. This will be good for both you and your employer. That is what you have to emphasize.

How are you going to keep track of your time? I have a timer that I set for an hour at a time. When it dings I make a slash on a notebook page. If I get interupted and have to help hubby I stop the timer, and resume when I get back to the computer. So I do have distractions, but the company is not paying for them. I also have distractions when I am in the office, but the company does pay for that.

Will you work set hours, or will your hours need to be flexible? Mine are extremely flexible, often needing to take hubby to appts in the day, and then working in the evening. I frequently work weekends. This is also to the company's advantage, since without this felxibility I might not be able to meet deadlines.

How will you handle meetings concerning your work? Will you come in to a weekly meeting? Will you be able to go in for important meetings on short notice? Think this out in advance, so you will have a plan if your boss asks. I attend most meetings by conference call. That is part of the culture where I work, and I'm seldom the only one who has dialed in instead of driven in.

My husband attends a day program a couple of days a week. That ensures I have some uninterupted blocks of time to work on projects. Those are also the days I try to schedule in-office time.

We need my income. I need to build up my SS credits and my pension. Working from home has been ideal for me, and works well for my company as well.

I wish you the best of luck in proposing this to your boss.
I've thought of another things about working from home. Work is important to me, not only because it is necessary financially, but because with all the frustrations and lack of control of outcome that go with caregiving, it is very satisfying to be able to do some things over which I have some control. To meet deadlines. To produce something that somebody else needs. Perhaps even more than before I became a caregiver, work contributes to my sense of self worth. Therefore I have strong motivation to do it well. I need measurable quality in SOME area of my life. :)
ALMA:

I've made that mistake several times in this forum. It's easy to do when you're not there, it has nothing to do with you, it doesn't affect you in any way, and you really don't know or feel anything about the people involved nor the sacrifices they're having to make at a moment's notice.

Without extra help, caregiving turned my life into a 24/7 job that tested my mettle by exposing my weaknesses. ... And I definitely resented people so free and easy with the advice who wouldn't volunteer to spend a day with my mother and show me how it's done. Even if I paid them.

It's obvious you're smart and resourceful, but you still need to vent. Come scream with us. You'll feel a lot better.


Just want to thank everyone for their input, and for listening. It does feel good sometimes just to get it off your chest to someone who understands what you're going thru. I would've like to check in earlier, but, it's been another busy day. Keep the advice comin and I'm listening to your situations also. When I have something that maybe can help someone I'll definitely respond with it. I'm praying for all, at the moment that's all I offer. Thanks again everyone, hopefully I'll have some time tomorrow to set up a page, but I'll definitely be checking back in.

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