Three Ways to Help Loved Ones With Parkinson’s Disease
While it’s well-known and accepted that Parkinson’s disease is an incredibly hard disease for patients diagnosed with it, it’s less commonly accepted that it can also be incredibly hard on friends, families, and caregivers.
As a result, I’d like to share some tips that can help you help your loved one with their Parkinson’s.
1. Adjust and acclimate to new realities
It will take you all time to adjust to the new realities that Parkinson’s disease brings. There will be changes in how you each face everyday tasks, for instance, and it takes time to adjust to that. Give yourselves that time, and be patient with each other.
For instance, there are changes in writing, speaking, eating and all sorts of other skills, both motor and non-motor. Some of those changes will be more visible than others, and the progression of change will vary for each change as well.
Visible motor symptoms of Parkinson’s include bradykinesia (slow or involuntary movement), tremors (especially at rest), rigidity, impaired balance, limited or impaired muscular control, facial masks, and more.
Non-motor symptoms may include insomnia, depression, anxiety, loss of taste or smell, and more. Orthostatic hypotension (low blood pressure when changing positions, such as standing up) is also common, and as such, you may have to encourage your loved one to stand up slowly, lest they get dizzy and fall.
Problems with speech, swallowing, and handling liquids are also common. Ways in which you can help including making pieces of food smaller, using straws, and changing the textures of various foods. Dehydration, constipation, and bladder issues may also arise, and you will need to help them face those issues with kindness, grace, and compassion.
2. Practice communication
Because Parkinson’s can affect patients in so many ways and can vary so widely, it often requires a wide range of specialists and treatment strategies. This means a big treatment team in many cases, which means lots of appointments, various medications, and more to keep track of than Parkinson’s patients may be able to manage on their own.
Quite frankly: They will need your help. So be there for them. Go to appointments with them, and help advocate for their care. Ask questions about treatments and medications. Be communicative, with your loved one and with their care team, to help ensure they get the best possible care and information.
Parkinson’s is a complex disease, and there is a definite learning curve, so ask lots of questions. Do research. You won’t be able to get them better care without understanding why they are getting the care they currently are, and what the pros and cons of different approaches and medications are. So practice clear communication.
If you are caring for a loved one at home, do what you can to help them be comfortable and limit risks. This is again somewhere where communication is key: For instance, if your loved one has difficulties with motor control, balance, and coordination, what are ways you can make their environment more comfortable and less hazardous? Ask questions, and help as you can. If you do this with kindness, patience, compassion, and grace, helping loved ones with various tasks doesn’t have to be embarrassing. Instead, it can be a shared history, a way of showing love.
And if your loved one is in assisted living or getting other care, ask questions about the care they are receiving and how you can help. Create schedules so other family members and friends can help stagger your visits, to help ensure they get the best possible care without being overwhelmed.
3. Don’t forget self-care
Lastly, it can be easy to forget to take care of yourself when you are caring for a loved one with Parkinson’s. And yet, if you don’t practice self-care, you aren’t going to be a very good caretaker or help, either.
So don’t be afraid to ask family members or friends for help where you need it so that you can also take care of yourself. Quite frequently they want to help, but don’t know how and may be afraid to ask.
When you do take time out for yourself, it’s easy to feel guilty about doing so. Building a routine can help alleviate that guilt, even if it is just 15 minute intervals you set aside, or a day each week where someone else steps in for you. You need to take care of yourself in order to give better care, to be your most patient, compassionate, and kind self, so build that structure into your life.
Whether it’s journaling, yoga, or setting aside time to read a book in the bath, give yourself time to get away. And look at other ways to get support, too. For instance, a Parkinson’s support group can be invaluable, especially in seeing what other strategies caregivers use and how they create space for themselves as well.
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