May 11th, 2015, I went from daughter to caregiver. My healthy 78 year old father had an aneurysm.
At first, we weren’t sure anything was really wrong. He had gotten into a minor fender bender and was at home. He seemed a bit disoriented and said he was thirsty. I thought maybe he was just a bit shook up from the experience. When I said he should go to the doctor he said, “ok”. This is the man who didn’t even think he needed to go to the hospital when half his finger was hanging by a thread. I called 911. He lived about 45 minutes from my house so I couldn’t run down there. The fireman called me when they reached the house and asked me a few questions – does he typically know what year it is and who the President was.
Yes and yes. My heart sank. We met them at the hospital and when the ICU doctor came out to talk to us about DNR’s (Do not resuscitate) I knew this was much more serious than we originally thought.
He spent 2 weeks in the neurological ICU and then moved to a rehab center. It was when we were in the rehab center that I began a journey I wouldn’t wish upon anyone. 18 months later and I’m still learning many difficult lessons. The most important is people don’t give you information unless you ask for it and you never know what to ask unless you learn the hard way.
A couple of things to realize, an aging parent goes through stages – much like the growing of a child. Like raising a child, you’re very much raising your aging parent. Except, the stages are reversed. It’s a sad way to look at things but if you keep this in mind, it’ll help you get through it and try to prepare for things as they come.
Here are some questions to ask yourself, your parents while they’re still healthy, and doctors and caregivers.
- Is their condition one that can get worse? i.e. Demential, Alzheimers, brain injury. In the case of my father, I did ask this question but the doctors didn’t answer. They said “they didn’t know”. Which you’ll hear a lot when you’re dealing with this situation. It’s an awful answer just because it gives you no direction. I learned to rephrase it. “What are some possible outcomes with their condition so that I may prepare for them?” If you don’t get an answer to your question, don’t accept it! Rephrase your question as many times as possible until you get some direction. It may frustrate the doctors and nurses but it’s nowhere near as frustrating as you trying to figure out what to do.
- What level of care do they need now and what level of care will they need. This is a question that will continuously evolve. Prepare for the worst. The worst being hospice care.
- What type of coverage do they have to help cover this level of care? Nursing homes and group homes start at $3000/mo. State provided care homes are cheaper but trust me, you don’t want to go that route if you can help it. Even then, they’re at least $1800/mo. And we’re talking really low level and low quality of care. 24 hour nursing care for the level of care my father needs at a very minimum is $3500/mo and this is only for his home. This does not include any additional medical care he needs. Do you or your parents have long term care insurance? If not, look into it and look into it now because many insurance companies are doing away with this type of insurance because of the astronomical costs.
- Do they have savings? Do they have assets? What happens if they become incapacitated? Fortunately, the one thing we did have that was a tremendous help is I was already assigned as my father’s power of attorney. I was able to sell his home immediately and provide what little money he got from it towards care. Are they considering a reverse mortgage? They may not want to if that’s their home is their only financial protection toward their long term care.
- How familiar are you and your family members with their wishes? It’s a difficult conversation to have – but not as difficult as it would be if the family didn’t agree with this after the fact.
- Does your parents or you have a Living Will in place? My husband and I have been working on our will. What’s important about who we leave things with is do the people we’re leaving things with, including care, is do they know we’re doing this? We have my husband’s mother as the guardian for our son. But since she lives in Germany it would take some time for her to become the sole caregiver. In the meantime, we have a very close friend of the family caring for our son until she’s able to make the arrangement. We spoke to her about it, first. Can you imagine if something happened and an attorney called her and sprung this on her? Plus, if something did happen – our family friend already knows to jump in before even being called by an attorney or the police. We don’t want our son having the burden or the stress on top of losing a parent to figure this out.
- DNR – (Do not resuscitate) – This is an important discussion to have with your parents, your family, and your doctor. Talk to them about what this means and come to an agreement while everyone is healthy. Resuscitating an aging parent, while it seems like the right thing to do, could possibly be the worst thing you do to a loved one. Talk about this with their doctor beforehand. You’d be surprised what you find out.
- What sort of nursing care can you afford and what do you want? We all want to live out our days in the comfortable surrounding of our own home. But is this truly a possibility? Does your home have stairs? If you need a live-in nurse, can you provide the space? Having caregivers come to the home is expensive, especially if you need 24 hour assistance. Average cost of a caregiver coming to the home is $20-$25/hour. If you need a nurse, you’re looking at 6 figures a year for round the clock care. This isn’t possible for most people. Are your parents moving in with you? If so, do you have a safe place for them to stay? This may require some remodeling to your home. (Walk in showers, safety bars, alarm systems, slip resistant floors, etc) Will someone be with them 24 hours a day? Even if they live with you, you may still need to bring in caregivers part time to assist with showers, bathroom needs, etc.
- And lastly, there may come a time that with everything you did – they need to move into hospice care. Is this something you want to provide at your own home? If not, research your area to see what there is. If you have kids at home you’ll also need to consider their needs. While having your family close together is a great thing, having an aging parent – especially one that needs memory care – is not a graceful process and can be traumatizing to young ones at home. Consider everyone’s needs and have these discussions while everyone is still healthy.
If you don’t have these answers in place, if your parents don’t, you can grow to resent their lack of responsibility. They may not know they need all these answers. They think they’ll grow old gracefully and pass away in their sleep. But, like in my case, you may end up with a parent who needs the highest level of care and you weren’t prepared for it. I wish we had these answers beforehand so my focus could’ve been on spending quality time with my father instead of spending all my spare time trying to get him care he needs.
Last year, not only did we end up draining all his accounts and his assets within the first few months, by the end of the year, we drained our own and even had to take out two loans to pay for his care. We have spent 12 months + fighting with the VA to get some help with his benefits. My dad’s retirement covers 1/4th of his care. If my husband and I, who very comfortably make a 6 figure income, are struggling to provide the care he needs, what will it be like for most people?
If you have questions or your own experiences, please share them in the comments below.