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.
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.
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 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.
I think you owe your mother the best care she can have. If that is not directly by you now, that is sad, but it is the way it is. You will continue to provide loving support for your mother, be with her often, and advocate for her, ensuring appropriate care levels.
Hugs to you in this very difficult time.