Ladies we are getting older, which means that our parents are not getting younger. And for some of us, that means having to become the caregiver and help out our parents or even move them into your home. Whether it be for aging purposes, and you don’t want them alone or for an illness like Alzheimer’s or Dementia and you can’t leave them alone. You want to be able to help your parents, but sometimes we just don’t know how or we bite off more than we can chew.
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So how can you bring up a topic like this with them or how can you care for our parents in a way that doesn’t cause burnout for us? How do you find the balance between living your life and making sure their end of life care is done in such a way that is decent and humane?
We are all seeing what is happening to our aging parents and family members and I wanted to talk to someone about how one can feel taking care of aging parents, and/or other family members and the additional responsibilities we take on , how can we keep it from crushing us, and what we can do for ourselves to be the best possible caregiver. And this is where the wonderful Judy Burkle comes in!
Judy Burkle, MSW, and Coach for adults with aging parents has worked in this field for over 20 years. She has worked with adults while their aging parents are in hospitals, nursing homes, home settings, and assisted living facilities. And her goal is to help them develop a comprehensive plan (logistical, financial, and caregiving) that also addresses their self-care goals.
Most people can stand up and say that they know someone who has Alzheimer’s or a form of Dementia. It seems to be happening younger and younger and the families just don’t know what to do! They try to take on more than they can chew, or they burn themselves out or they just don’t know how to even talk to that parent or family member about what they are seeing and how they can step in to help.
At what point do you start to say to yourself, a family member might need some help and this is more than just forgetfulness? Just forgetting a word every once in a while is okay and totally normal. It’s more like when you get into the car, and you forget what to do next. Or your mom is calling you from somewhere and they don’t know how to get home, or maybe she hasn’t showered in a week. Do you go visit your parents and all the food is rotten? And maybe you start to scratch your head and say something is going on here…. Could they be not making payments when they are good about it? This is when you get really concerned. It’s more the bigger, day-to-day things they have been doing forever that are the indicators as to something bigger.
You see this happening regularly to Mom and Dad. Do I hire someone to help out? Do they go somewhere? Do I move in with them or do they move in with me? Do they need support and what is the right support?
The first thing I would suggest is to start gently. Go to your parent’s house because sometimes they have a sense of it going on and they will hide. Go there to observe and pay attention. If you are worried about their eating, take a look in the kitchen while you are there. Tell them about a neighbor or friend (not related to them specifically) who is in a situation and let them know that because they are similar in age that you may be worried about them and see if you can just attend a doctor’s appointment with them.
Sometimes it could just be an imbalance of stuff in their bodies that has to be rewired with medication. But if it is a form of Dementia, then they would have to go and visit the neurologist for a more in-depth workup. What type of dementia is it and what medication can you take to slow it down?
It is so important to go with a loved one to an appointment because if you feel like something is going on and you don’t go or send someone you trust, you are not going to hear the whole story or only bits and pieces.
At what point do I suggest to my parents that I should or need to have the piece of paper that whatever they tell her they can tell me?
This would be a Power of Attorney (Medical POA) or an Advanced Directive. You would then want a copy for both yourself and your parents. Take a look at your state’s guidelines because each state is different if you do not have any paperwork in place. Another podcast I’ve done on estate planning, good for you and your parents.
If you haven’t had this conversation yet with your parents, it may be something you want to have next time you are with them. And when you do take care of this paperwork, be sure to have a copy for yourself as well.
What are the Stages of Dementia?
There are different types of dementia. Alzheimer’s is one and this depends on what age you are diagnosed with it. If you are diagnosed early in age it tends to be quicker and a lot more difficult. But at the same time, an elderly person could take up to 10 years to process through this. Vascular dementia is another form, and this is from stroke or heart trouble, and this looks different from Alzheimer’s dementia. It’s really important to know what they may have or what they are going through so that you know what exactly to expect.
Who can help me to figure out what I need to do?
Someone like Judy who has a coaching program, who helps people that are faced with these types of things. Social workers are also a good resource. Area Agency On Aging is a great resource to look into. And then also, talk to other people with similar situations. Find a Caregiver Support Group because this is vital and so important. You can feel so very alone during all of this and just not know what to do!
Feeling alone is very normal when it comes to these circumstances. There are a lot of times where you cannot leave the person or cannot travel or go anywhere. You have to constantly watch them and may not be able to get help in the home to assist you. So, talking about how you are feeling with others who are going through this is so important.
If you are able to get help, is it best to introduce help earlier so that it is more ingrained in their routine than it feels like out of left field with them? Yes, the earlier the better! This generation is so hard to accept help, even house cleaning. It’s a pride thing so you have to slowly address the situation. If Mom is always taking care of Dad with dementia and prides herself on a clean house and is too busy helping her husband, then maybe you offer to pay for a house cleaner so she can get used to that, and then see if you can try something else like hiring someone to come stay with Dad so that she can go get her hair done or play with the ladies at church.
30% of all caregivers die before their loved one with the illness does. I see the pressure that people put on themselves… that for some reason the aging parent’s needs are here and other priorities in your life are there, then everything FOR YOU IS DOWN AT THE BOTTOM. We feel like it’s selfish to take care of ourselves as well, but it’s not. You cannot give your best self if you don’t take care of yourself first.
If I am living paycheck to paycheck and it’s all I can do but I would love to hire someone to clean and cook but I don’t have it in the budget, how can I put my oxygen mask on first?
Look into your state’s Medicaid program and see what kind of aid that you can apply for through the state. One aspect of Medicaid is to help with long-term care and the elderly. They will pay for the nursing home portion when someone cannot cover it. Sometimes can pay for in-home care to help you in the home. You want to prevent nursing home care because it is cheaper for the state to pay for at-home care than paying for a nursing home. So, a lot of them will help with that in-home care that you may need.
What do you do if they don’t want to go into a nursing home, but you feel it may be best? How do you have this conversation with them about them not being able to live with you? Or what do you do when you cannot live in your own home? What is the plan?
We have to honor their decision if they want to stay home. Adults can make bad decisions as well. So, if they don’t want to go, then you need to find out where their important things are so that you can help them in the best way possible.
How do you protect boundaries?
Hopefully, the support system is supportive and not questioning what you are doing, and you have a support system that can help you. That is step one. Another thing you can do to help is to attend therapy to work through what the need is you’re filling by constantly breaking your boundaries. Once you know why you are doing this, then you can work on setting and keeping those boundaries.
Constant self-care work, exercise, meditation just keeps the thought in the forefront that I have to put myself first. This is often not done with caregivers and even as moms, we tend to do whatever we need to get done, but if you are participating in your own self-care regularly, it is easier for you to set boundaries. Because once you start setting those boundaries, it will get so much better!
Support groups or a friend to talk to at a support group to gently remind you that you need to put yourself first before your parents is something that you may need as well. It is ok to do things for you once in a while. Most people are a people pleaser and they have done it for so long and they are trying to figure out how to break the cycle. Because they are burnt to a crisp!
What if someone didn’t have a person to notice what was going on? If your kids live in another state and don’t visit so often?
When you do visit, walk around to the neighborhood, and give your contact information. Ask them to notify you if you see anything out of sorts or get worried about your parents or family members. I would also try to video chat the doctor when your mom is at the doctors and try to be a part of that appointment if you can as well.
Also, when you do visit, make it really meaningful while you are there. Make those connections and talk about maybe getting a house cleaner to help them out so they don’t have to do as much. And if they agree, make sure after she leaves the house from cleaning you connect with that person and see how things were in the house! Forge relationships with the people helping or cleaning or cooking.
The most important thing is to start having these awkward conversations now while you can. Where they want to live if it comes to it, what healthcare they have, all of those things. The conversations we are having, not many people have them and then when they need to its possibly too late. No one wants to think your parents are going to get old and we don’t want to think anything can go wrong but it does, and we have to be prepared.
Second most important, is evaluate your boundaries that you have if you have any. What are we willing to accept and what are we not willing to accept? What are our lowest common standards? Think about this and make sure you are taking care of YOU as much as you are taking care of someone else!
What is one thing that makes you feel magical?
I think if I had a superpower or was magical, I would want to be the dream of a genie person and twinkle my nose to transport myself to the beach as often as I would like to or the mountains as often as I would like to. That would be my superpower. I wouldn’t want to see into the future, but I want to be able to just go wherever I want and not spend the time getting to all these places.
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