I Don't Even Know What to Call This

Not actually Erin.

Picture by KJ Photography

As& is used with permission.

This post is another update about my father. As the title says, I don't know what kind of prepping this might be, assuming this even is a form of prepping; I just hope that by this point some of you may be learning from my experience and so I'll keep you updated. 

Last month, I wrote about prepping for my father coming home after nearly 1.5 month in the rehab facility. As it turns out, that was premature; they kept him for another 3 weeks because he kept passing out after physical therapy. The reason for this was eventually narrowed down to his blood pressure medication: it was calibrated for his weight (165 lbs) upon going into rehab, but while there he lost 25 pounds due to exercise, disliking the food there, and an inability to get snacks. This meant that his meds dropped his BP to a dangerously low level, and he would frequently get lightheaded and/or pass out after exercise. 

If this sounds like incompetence to you, get comfortable. 

Once they had this fainting under control, they pronounced him good to return home. Despite this, he was told that he needed a walker even around the house, and that he would need a wheelchair when leaving the house. Fortunately, this was provided to us. 

He returned home on noon Wednesday. My mother and I both knew it would only be a matter of time until he fell again, because he is a noncompliant patient who refuses to do his PT and OT exercises at home. What neither of us expected was that he would fall within 48 hours of being home!

Around 2 am Friday morning, he got up to use the bathroom (without using his walker, because he's stubborn like that) and fell. Unlike the other times he's fallen, this time he was able to pick himself up off the ground after 15 minutes, likely as a result of all the physical therapy he'd done. When my mother woke up around 5 am, he was complaining of constant pain and was worried that he'd broken his hip again, so she called an ambulance to take him to the hospital. 

Sometime around 1pm Friday, we received a call from the doctor at the ER who told us that they would be keeping him through the weekend in order to run tests to figure out why he fell and why he was in pain. As far as they could tell, he hadn't broken anything from his fall, but his right foot is in constant pain. I suspect that my father has diabetes as he's right on the line between pre-diabetic and actual diabetic, and I'm told that diabetes can present as dementia in elderly patients, and foot ailments are common among diabetics. Unfortunately, this is all supposition on my part. 

This Saturday morning, mom went to see him in the hospital and talked to his doctor and the social worker who accompanied him. Mom made sure to let the doctor know that the rehab place had assured my father that he was strong enough to come home, and yet he'd fallen less than two days later, and she was concerned he would fall again and injure himself. 

The doctor didn't know any of this and said he would get dad's medical records from the rehab home. The social worker contacted rehab, learned they had a free bed, and promptly reserved it for him there and then. It's our understanding that the hospital will transfer him to rehab on Monday. 

We don't know how long rehab will keep him. Mom and I both hope that it will be until the VA gets off its butt and admits him, but we don't know how likely that is. Speaking of the VA, both the social worker and our local VA Affairs representative are doing their best to kick the VA into doing something, and they're taking the tactic of "This veteran is a falling risk and needs 24 hour care. Doesn't that move him to the very front of the line?" We don't know if this will work or not, but it won't hurt to ask. 

Now you know as much as my mother and I do. We still don't know why he's falling or why his foot hurts, or what else to do to speed things along. 

All I can do is sincerely hope that someone can learn from our example. 

Prepping for Dad's Return

Not actually Erin.

Picture by KJ Photography

& is used with permission.

It's been almost 1.5 months since dad went into the hospital and then to a rehab facility, and now the rehab place is making noises about sending him home this week. 

This is clearly not what we wanted, but the Veteran's Administration is taking its sweet time in processing the paperwork. As I understand they have 30 days to review it, and from context it seems like that needs to be interpreted as "If they can't find a reason to reject it within a month then it will be approved" rather than "It will take 30 days or less to approve it", and they seem intent upon running out the clock instead of processing it in a timely manner. Once that's done, dad gets put on a waiting list and even though he's 100% disabled he still has to wait his turn behind all the other 100% disabled people ahead of him. 

So now we're making the house as safe as we can for an 85 year old man with balance problems and falling issues. We've cleared out most of the junk from his room, because that was a tripping hazard and was one of the reasons he didn't keep a walker by his bed. Now he has no such excuse. 

Although, to be honest, I don't think it will make a difference. Dad is a non-compliant patient when it comes to things like physical therapy, so even though he's stronger now because of physical and occupational therapy from the rehab home I fully expect he'll stop doing his exercises within weeks of coming home. From there it's only a matter of when he falls, not if, and who knows what kind of damage he'll do to himself when that happens. I'm about 90% sure that the recent decline in his mental state is due to him hitting his head in multiple falls. 

Other than that, I have no idea what any of us can do. For reasons that make no sense to me given that Florida is a popular state for retirement, our interior doors aren't made to accommodate wheelchairs. As in, "a person in a wheelchair literally cannot pass through the doorway" incompatible. I have no idea what mom and I are going to do if he has to have one. We certainly aren't strong enough to lift a 165 lb, 5'7" sack of potatoes into and out of a chair multiple times a day without injuring ourselves. 

Yes, I realize this is a poor article. We are horribly unprepared for this and have no idea how to proceed. We had hoped he'd be in a nursing home by now, but clearly that isn't going to happen. 

Don't let this happen to you. If you have an elderly relative who is showing signs of deterioration, start the paperwork immediately so that you don't have to wait like we do. 

Dementia & Elderly Care

Not actually Erin.

Picture by KJ Photography

& is used with permission.

This one's going to be a ramble, because my post is less a case of "Here's what you need to do" and more like "This is what I've learned through experience."

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.