Caregiving 101

Any time my late husband and I went anywhere during his last year of illness I was on high alert – worried he would fall, or choke, or not able to cut his own food or go to the bathroom without assistance. Of course it was like this at home too, but the difference in public was that I had the added stress of pretending to be happy and relaxed. I knew my husband was dying, so I would never deny him any social opportunity he was in the mood to try, but it wasn’t easy. And if you didn’t know us well, you might actually think I was having fun. That’s the thing about caregiving. It’s not always obvious to others how stressful it is and what actually goes on behind closed doors.

I had dinner with some old friends last week and the subject of caring for parents came up – we’re just at that age. Between caring for my mother before she died from breast cancer and caring for my husband, I have lots of experience and more than a few opinions on best practices. I still get a little twitchy thinking about caregiving as it was such a recent and stressful time in my life, but it also gives me anxiety when I think friends might be underestimating and underpreparing for what lies ahead. To that end, I thought that I might suggest a few things to consider:

1. You’ll need some kind of plan: Yes, it’s a tough conversation, but if you want to avoid stress down the road, it’s necessary. Include everyone who would be involved with the caretaking, but know that all decisions are ultimately the patients’/parents’. Have a plan for emergencies, a plan for five years, and a plan for ten years or longer. One of the hardest parts of being a caregiver is not knowing how long you will have the job. Most of us could do anything for six months or a year, but what will you do if intense care is needed for longer? How will this affect your own future plans? Consider all scenarios and write things down.
2. Consider your team: Who’s the organizer? Who is the gifted caretaker? Who has a medical background? Who loves to cook? Who is great at paperwork? What about the cousin who is a nurse? Who loves to talk and might serve as a good visitor for your family member? The friend who is a physical therapist? Figure out the strengths and be honest with the weak spots. Maybe your sister with six kids can’t care for anyone else, but she can freeze a meal or two since she’s cooking all the time. Maybe your brother has horrible bedside manner but is great with finances. Again, as much as reasonably possible, let your family member make decisions for themselves, but have ideas ready. Caretaking takes a village.
3. Health issues: Sure, your parents may die peacefully in their sleep reading the Sunday paper, but they probably won’t. The odds are much better that they will develop some issue – cancer, dementia, diabetes, arthritis, COPD, etc. – that will eventually require increased care. Do you know what medicines they are taking? Do you keep a copy of this list on your phone or in your purse? Do you know their doctors’ information and have their health issues written down? Also know that things can change overnight. What if they have a heart attack, a stroke, or an accident? Sure, they will be in the hospital for a bit, but they might never recover fully. Don’t assume that if they are still walking, driving, and getting around just fine right now that things can’t change quickly.
4. Examine their finances (if they’ll let you): Health care can be expensive, and while Medicare covers doctors, hospitals and most prescriptions fairly well, it rarely covers housing or extended in-home nursing. Know what your budget is for the future. Are you, or a sibling, also on their financial accounts? Do you have a Power of Attorney or financial representative assigned? Who can pay their bills if they become incapacitated? Do they have long-term care insurance? Are all of their financial documents readily accessible? Do you know where their passwords are located?
5. Housing: parents willing to move? If so, consider an independent living facility with the ability to move into assisted living or total nursing care. It’s not always easy to “jump in” at the higher level care housing as preference is often given to current residents. These types of residences usually have doctors and nurses on staff, rehab centers in the building, meal plans, social activities, and space inside for people to walk around when the weather is bad. These are not the depressing nursing homes we used to think of years ago – they’ve come a long way from that stereotype. Most facilities (at least here in Maryland) now more closely resemble college campuses with dining rooms, bars, theatres, stores, swimming pools, gyms, and post offices. They also come in a variety of price points, with utilities and meals included. Are they concerned about losing your inheritance? Some homes will return 90% of your down payment once they pass. Also check to see what their policy is if your parent runs out of money – most have a benevolent program that will allow them to stay.
6. Housing: parents want to stay in their home? Is it safe? Are there a lot of stairs or is there a first floor full bath if needed? Are they still able to shop and cook for themselves? Are they able to clean/change sheets/do general upkeep of a home or apartment? Do you have a check-in system in place where they call a friend or family member each morning, or send a text? If one of your parents falls ill, is the other one able to care for them? Can they manage medications on their own each day? Also consider their mental/emotional health. Are they lonely or driving each other crazy? Do they get out of the house enough or get any exercise?
7. Housing: parents moving in with you? I considered this briefly with my own mother, and caution against it for several reasons. You may find you’re in over your head with the care required. Sure, you can learn – I figured out how to deal with pressure sores, feeding tubes, and ventilators for my husband, but my mother’s diabetes was often out of control and would have been tougher. Are you/any family member a medical professional? There are things you could miss – ways to keep them comfortable or avoid emergency rooms – that a nurse might know. I was lucky to have plenty of nurse/doctor friends who provided support for my husband, but not everyone has angels at their disposal. The other issue is if they are in your home, you have no sanctuary. While you may think it noble to have your parents move in with you, it can also change the entire dynamic/energy of your home as you know it. A quiet home can become loud, a neat home can become messy, a home with hobbies can be filled with medical requests that don’t end. You may not be able to entertain anymore, if that’s your thing. It can be very, very stressful, and it’s much harder to take a break when your home becomes a hospital. You should also consider all of your other family members – caring for a parent can change your relationship with your spouse and it can stress out your kids to see someone with a critical illness or make them not want to invite friends over. What happens if you or your own spouse has a health issue or become ill? Or one of your children? Could you care for more than one person? Also consider if your loved one requires around the clock care – are you willing/able to stop working? Could you be home full time if necessary? Maybe none of these things apply to you, but please, think about it.
8. In-home nursing: If you think you will rely on in-home care, think again. There is a severe nursing shortage right now, and you may not be able to find anyone to help you for several months. In an urgent situation (like I was in with my late husband), this can be a real problem. Assuming you can find it, know that it is very expensive and you may just be able to afford a night nurse so you can sleep. You might still need to provide daytime care. This is just not an option I would count on since Covid.
9. Hospice: Don’t be afraid of calling hospice early in your journey. They will come and assess your situation, offer suggestions, and guide you as to the right time to sign up. There are often several hospices agencies around, so it also helps to interview them before you really need them. Yes, hospice is traditionally used when the patient *could* pass within a six month time frame, but that doesn’t mean they will. It just means that you are no longer seeking a cure for whatever illness you have, but the benefits are numerous. An around the clock nurse is available via phone or text. They will keep your loved one comfortable with as many pain meds as necessary. They can help bathe and dress your loved one. They provide equipment – hospital beds, walkers, wheelchairs, etc. They can provide music therapy and counseling to all family members. Their goal is to keep the patient out of the hospital, but will provide transportation if needed. Also, hospice nurses are goddamn angels among us and have incredible patience and knowledge about the death/dying process.
10. Self care: This isn’t just a catch phrase. If you are really going to care for your parents (or anyone), you need to stay healthy, mentally and physically. Walk outside. Talk to friends. Get a grief counselor or therapist. Keep your hobbies alive. Set boundaries early and often. Be honest with your limitations. In fact, be honest about everything you’re feeling. When my husband was going through the final stages of ALS it really helped for me to express my concerns when he was asking more than I could give. It saved us from any resentment or guilt, and helped us to quickly find a compromise. Life’s too short to dance around the hard stuff. Get over being uncomfortable.
    
    In the end, you just need to do what works best for your family. Everyone’s dynamics with their parents and spouses is unique, and both giving and receiving care is stressful on these relationships. Whatever you decide, I just want you to know there are so many options – this is truly a subculture you aren’t aware of until you’re in it. Feel free to message me if there are any questions I haven’t addressed!