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Not actually Erin. & is used with permission. |
To give you a brief idea of what my home life is like, I live with my elderly parents (dad is 85, mom is 82) and in exchange for room and board I do the things they can't do, like drive them to doctor's appointments, take them to the ER late and night, fix the computer, lift things they cannot, climb ladders to reach things, etc. In short, I'm the only able-bodied person in the house, which is rather like having the lamest superpowers ever. ("Behold NORMALWOMAN! She has all the abilities of a middle-aged woman, which makes her the strongest, sturdiest, and fastest person in the house!")
My father has Parkinson's Disease, and his manifests primarily as having bad balance. He falls a lot, and frequently hits his head. He refuses to use his walker inside the house, and I don't know how much of that is due to him just being an ornery cuss (we're Texan) or how much of that is due to his dementia. Parkinson's is a neuro-degenerative disease, and one of the non-motor symptoms is dementia. We knew things were bad when he complained that the remote control wasn't working... while pointing the cordless phone at the TV.
So, my father falls a lot, injures himself often, and frequently can't get up without help. This means that I have become an on-call nurse, or at least an orderly, 24/7/365. Here's what I've learned:
- If you can at all afford it, get in-home care for your loved ones with dementia or who otherwise need constant monitoring. Not only will they respond to professional care, but -- and I cannot stress this enough -- you need the constant burden off your shoulders. Even professional caregivers have shifts which end and they get to go home at the end of the day, but if you are a live-in caregiver then your shift never ends and that's terrible for your morale and your physical health.
- The moment your loved one is diagnosed with a degenerative illness you should start the legal paperwork so that someone in the family has both Medical and Financial Power of Attorney over them. This is because, in my experience, it takes a long time for these things to go through; we started the ball rolling in mid-February of this year and we still don't have everything done.
- All of this has been with my father's help, by the way, and the reason we waited so long was because he was stubborn and didn't want to give up control, and it took him several nasty falls to realize that things were getting worse and not better. If we'd done this sooner we could have had him in a VA home by now; as it currently stands, when we finally get all the paperwork done he'll still have to be on a waiting list.
- Get the paperwork done early if possible. Even if your loved one fights you on this. It's better to have a fight now and get them help sooner than wait until they give in and then you're trying to beat the clock.
- Speaking of paperwork, I don't know about other homes but I know that the Veteran's Home where my father wants to go requires miles and tons of forms, including but not restricted to: a checkup at the VA hospital; a transfer of all his medical documentation to them; a form filled out by his primary care physician stating that my father needs constant care; documentation of his disability (in his case he's 100% disabled); and of course the previously mentioned Powers of Attorney. I think we'll be lucky if we get him into the VA home before July, and I honestly don't know if he will last that long; one of these days he's going to take a nasty fall and break something.
- Finally, remember to take care of yourself. If you get sick because you push yourself too hard, or injure yourself because you try to do too much, you've hurt two people: yourself and the person you're caring for. In my case I hurt three, because then the burden falls to my mother and she's already at her wit's end.
- If you can afford it, seeing a therapist is highly recommended. It's immensely frustrating having to take care of an adult-sized, adult-weight toddler, and that's what dementia patients can become. It's very, very easy to become resentful of the person for whom you're caring, and that can lead to tension at home and strained relationships. The very last thing you want is for your final years with someone to be filled with anger towards them.
- To circle back, this is why you need professional help in the home. Being able to take a break, to have "me time", to be able to do things for yourself without filtering it through the lens of "Can I do this or will my duties prevent it?" will help your mental and emotional health immensely.
That's all I have for now. When I learn more I will post a follow-up.
Regarding POAs...medical, financial, and general. Also, be clear that if you have them sign a PoA after there is a formal diagnosis of dementia, you open yourself to elder abuse charges. They MUST be of sound mind to sign those documents. Yes, I've been through that with local adult protective services, they can be just as nasty and abusive as CPS. If you get to that point and have a formal dementia diagnosis, you should think strongly about a conservatorship.
ReplyDeleteYes to everything you said, and even more challenging is that both seniors are actively resisting our efforts because "everything is fine."
ReplyDeleteMy father passed last year, and I considered it a blessing. His Parkinson's/dementia had progressed to constant suspicion of his wife/caregiver and random stashing of items he didn't want "in enemy hands".
ReplyDeleteThe smartest thing he did, upon diagnosis, was immediately contract for long-term care coverage. Using that, my mother was able to have someone to corral, feed, & bathe the giant toddler that my father eventually became in his last years. POA paperwork was in place, so at least that stressor was removed.
I miss him, but I miss the pre-diagnosis person, not so much the frustrated, confused husk that finally expired that last day.
I hope that you are able to take care of your own mental and physical needs. Having been in a similar situation, as so many people my age seem to have been, I know just how much pressure you can feel both to take care of your loved ones, and to try and make sure that you don't feel resentment about doing so. And of course, when at times, you do feel anger or resentment at having to do so, as is normal for everyone, the guilt can often follow.
ReplyDeleteYou are doing a good, loving thing, but you don't feel that you must be a super hero. Seek help if or when you need it.
Pigpen51. I may be feeling as much, or maybe more, frustration than anger. I've been good at fixing things my entire life, and there is no fixing this. But as you said, there is anger.
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