Elderly and Ill

Dad has gotten better over the past 6 months or so, since we got him off that awful anti-seizure medication. Indeed it prevented seizures, but it also made him nearly comatose, sleepy all the time, unable to put together coherent thoughts.

Indeed it prevented seizures...hah! He never had a history of epilepsy or seizures and he had one seizure once after (minor) brain surgery. I understand keeping him on the medication for a while, but seriously, did he have to have it for the rest of his life? I said no.

This situation illustrates the need for an advocate for the elderly and sick. His facility would have gladly given him this stuff for the rest of his life, if I didn't decide to investigate if he needed it, then follow through on the steps to get him off of it safely.

Anyway, that's not the reason I am writing today.

I want to vent a little about families and myths. I am tired of hearing about how your family member is still sharp as a tack and lives independently at home alone at age 98. And drinks a shot of gin every night. And smokes a cigar every day. And still drives the tractor and farms 50 acres every spring.

You know what? Not everyone is that lucky.

You know what else? I bet he's not as independent as you may think. Maybe you're glossing over some of the less glamorous parts.

I presume there are the lucky few who make it to that age fully functional.

But most people do not. Their lifestyles catch up with them. Their genetics catch up with them. Or both. Some of them have repeated hospital admissions. They get admitted to rehab or nursing homes to recover from from surgeries or accidents. Most have good days and bad days.  Family members are left wringing their hands with a situation they really didn't want.

I guess I get a little angry because their comment about Dad ("oh, but he's so young!") has an implication that this was someone's fault. Or maybe if the family had been paying attention we could have avoided all of this. Or maybe if Dad had been living better this wouldn't have happened.

I don't think people are consciously criticizing - they're being a little thoughtless, maybe. People in their seventies shouldn't have these kinds of problems, right?

Dad lived a relatively healthy life, and he didn't deserve this. Perhaps it's something in our familial genetic makeup that makes us prone to dementia in our 70s - certainly not something we can control with lifestyle. All the crossword puzzles and mental exercises and good eating and exercise isn't going to alter the preprogrammed breakdown of cellular processes....at least not with today's state of medical knowledge.  Maybe it was something he did back in his 20s, but again, no one knows any cause-effect for Dad's type of dementia. The state of the knowledge today is "it just happens to some people."

It's something like how some cancer patients are bothered by others telling encouraging stories of their co-workers cousin who went into remission miraculously after being given only 3 months to live. Really, that's awesome for him. So what makes this cancer patient not have remission?

I am trying to come up with a conclusion for this post, but my first attempts have sounded mean spirited. I'm not overly upset about this. I just wanted to write about it, work though it, and get it off my chest. I think for me, this perspective points to the source of my compassion. Sometimes you just have to be in it and live with it.  Maybe even befriend it.

Caregiving for someone with dementia and other physical problems is hard. I try to do right by him, and mostly I do a good job.

When a Loved One is in a Rehab Hospital: Part 4

Caring for the Caregiver

Make no mistake: caregiving is exhausting work. As a nurse, I know from experience it's hard taking care of people you don't know. Ratchet it up a notch or two when it's a family member. You both bring your shared history to the dynamic between you, and that helps and hinders your caregiving and your mental health.

It's important to care for yourself. If you're worn out, angry, feeling alone or abandoned, not only do you feel lousy, your caregiving suffers. At least when it's an elder or grown up, you can (try to) explain your need for self-care. You don't have to own all of the burden of your loved one getting better. If they are an adult, you must rightfully assign the responsibility for getting better back on your loved one.

Caregiving is create the environment for healing and recovery. One element of that environment is a supportive, positive, energetic caregiver.

You're an adult too. Therefore, your care is ultimately your own responsibility.

Caring for Yourself

Establish goals for caring for your loved one.

Make these goals reasonable and stick to them. Example: I strove to Dad twice a day on "most days." Roughly, the most days translated to 4 or 5 days a week. Two days a week I visited him once or not at all. 

Re evaluate your goals.

If you are feeling inner conflict, too stressed out, at wits end repeatedly, maybe your goals are not a good fit and need a little tweaking. 

Remember you have power in the caregiving relationship.

While you want to be there for your loved one, you actually can walk away (for a while). It's a balance of the goals, feelings of guilt, good feelings when you know you've done good, and everything else going on in your life. 

Care for yourself physically.

Eat well. Exercise. Get enough sleep. Take your medications. Consider taking to your own health care team for pharmaceutical support (something for sleep, anxiety medication, etc.) This is an extremely stressful time, and maybe a little help would be good for you - only you can decide this. There is no shame or sin asking for and getting help. Of course, you and your physician or nurse practitioner will have to make this decision, given your unique situation. 

Also, now might be a good time to get a pedicure, manicure, facial, or massage.  Nothing is more cheery than brightly colored fingernails!

Care for yourself emotionally.

Keep up your social life, at least to some degree. Yes, you can go out with your spouse/partner, you can go see a movie, you can eat out, etc.  Food is often a comfort for people (rightly or wrongly). Don't go overboard, but if special goodie would help you feel nurtured, go ahead. I personally don't think this would be a great time to start a new diet, if you know what I mean. 

Also, keep up at least one of  your hobbies or activities that "feeds your soul." That's why I bought a sewing machine at my Dad's house (when I already have 3 machines at home. Yeah, I know.). I had some little projects going on that simply delighted me. It made me feel good. 

Care for your self spiritually.

I hope you have a spiritual community at a church or other place of worship. Let some in the community know and let them help you. Let them pray for you. Pray for them, too. 

Lessen the burden of communicating with so many people.

Use social media, like Facebook, Caring Bridge, etc. and post updates. Then let loved ones know to check there for updates. It gets burdensome to tell the story over and over, and you forget to whom you told what updates. It's a pain to be interrupted by a phone call while you're trying to relax and forget about the situation for a little while, even if it's someone you like and really want to keep up to date.  If they need that much information, invite them to join you in the caregiving (and watch them run away, hee hee)!

It takes a village.

It doesn't have to be all you. Other people can do things for your loved one that you cannot do. Example: Because I am the daughter, Dad can't talk to me about certain personal things. Yet, we had hired a care manager/consultant to work with Dad, and we still involve her in his care. She's "safe" for him to talk to about adult things. So, we bring her in and sometimes offer suggestions what Dad might need to talk about, and then let them take it from there. 

Encourage your loved one to care for him or herself.

Encourage them to make friends with other residents. Encourage them to call friends/family members. Then you know they won't be sitting all alone in their rooms feeling lonely, just waiting for you. And if they are, then it's their own doing. 

When you feel bad, do something for someone else. 

This is ancient wisdom. When I had my down moments, I would:

• Write cards to friends back home.

• Send something to people back home. (e.g. I mailed a little cookbook from my Mom's stuff that we were cleaning out, to a friend. I thought she would like it.)

• Make goodies (or buy something nice) for the staff at the rehab hospital.

• Make a craft for someone.

• Bring a goodie to your loved one's roommate/next room over, etc.

• Help out a neighbor or coworker.

• Write a lessons-learned blog post (like this! I'm helping the online community, or so I'm telling myself!)

• Walk a dog or play with a child. 

Remember, caregiving is basically good. You're doing good.  You know - good Karma, so to speak. Or for a Christian perspective, you're being like Christ to your loved one. That's a privilege.

These 10 strategies should help you keep up your energy, positive attitude, and happiness. This will keep you from feeling resentment or anger, and it will help you be a better caregiver.

I'd love to know your strategies too.  How do you care for yourself in a difficult or long-term caregiving situation?