Coming out of a long cold springtime here and just in time!!! The green grass and blue skies are so welcome. Fatigue was bad this winter, and for a while there I just wanted to curl up and sleep away my life. We all know PSP doesn't allow us to rest very often, or eat a meal without interruption. I was soooooooooo tired, and achy and just feeling sluggish. Decided to do my springtime detox and as promised, within a few days, my energy is better, no headaches, less joint pain, weight dropping a bit. just to encourage you to do something healthy for yourself Caregiver. It's ok. Take some time to think about what you need right now. And don't forget to count those blessings everyday- because a thankful spirit goes a long way to make a happy heart. Plant some seeds, get a massage, eat a very healthy diet, go to a concert, take a nature walk, organize your space.
What do you all do to take care of you?
Written by
Debspottery1
To view profiles and participate in discussions please or .
I try to walk outside and cover at least 10,000 steps a day. During that time, I pray and meditate - no music or podcasts. I can't tell you how important this is for me. I am my wife's primary, and I don't have outside help. She is about 9 years into showing symptoms of PSP. and it has been 5 years since PSP diagnosis (She was diagnosed with Parkinson's for a couple of years prior to being "upgraded" to PSP). I retired last summer to devote myself to my wife's care. She seems to be in a similar place of progression as your husband. It's not always easy to find the time for this, but I know my wife's sleep patterns so well that I wait for her to go to sleep when I know she will be out for a few hours, strap on my shoes and go. I stay within a few blocks of our home, so I check in on her every 15 minutes. Some days, I walk more than 20,000 steps.
Doing this has been a great benefit to me, both mentally and physically. I can't tell you how important this ritual has become for me.
True. Walking and getting away does wonders. I'm in the same boat as you. I also have a 93 year old mom with us with neuropathy, and we do have hospice check in, with a few hours of Bayada care to give me time to care for our property and shop. I look forward to mowing the yard as it's three hours of not thinking about anything but the nature I'm seeing. CurePSP also has a ZOOM support group here in the states and they - like us, are mostly doing the care themselves, so they help with practical ways to handle things as PSP progresses. It helps immensely, as I felt for a long while that the medical community knew very little of the issues we deal with at home caring as family.
Hi again!Perhaps these notes could be useful to you.
*Releasing the PSP caregiver and allowing him/her to have a life outside the home as well as to avoid strong or continuous physical and psychological efforts is fundamental. The main caregiver of a PSP patient is progressively taking on additional tasks. To the person's previous work (before the disease had been shown) must be added the work formerly done by the PSP patient, plus the management of the illness and the guidance and surveillance of people who form the help team. A special and continuous attention must be directed to the main caregiver and his/her medical history.
Remember that the main caregiver jobs and occupations grow along with age and the disease progression. Without significant help it is very difficult to carry out all these activities without suffering a severe wear-down.
Rest and sleep well is essential. Combat stress, too.
On the first years of the disease, the patient resists losing their autonomy trying movements and exercises that are increasingly difficult and logically increase the risk of falls and damage. The patient often discharges his/her frustration and complaints about the primary caregiver. It is a very hard and discouraging situation but it must be overcome. It is one more symptom. Also it is exhausting being on call 24 hours a day 7 days a week.
From our experience and also from my group of caregivers, it is essential to find efficient help that allows areas of freedom and leisure as well as vacation periods for the caregivers, far away from the PSP problems. At least ten days of holiday each six months are essential, supposed an effective and intense help with trained personnel throughout all the year.
As Bill F (Smart Patients) said: “As we look back on where we are, we have a wonderful support team of medical professionals, fitness trainers, church folks, nonprofit groups, friends/neighbors, paid caregivers, family members. It's absolutely amazing. Start now to build your team. You will need them, and they'll all want to help.”
JEN2017 said: “Nobody could/should go through this hard disease alone. Especially the caregiver”.
Someone in the community of caregivers once wrote “it is not my job to care for my loved one; it is my job to find the best care for my loved one”. And I would add that the main caregiver is the most appropriate to frequently express affection and accompaniment to the patient without excluding other friends or relatives.
AJK2001 said:“A demanding selection of external caregivers and their renewal depending on the circumstances and evolution of the disease is essential to maintain a good quality of life for both the patient and the patient's family”. This AJK2001 suggestion is essential to me.
There is always the possibility for the caregiver of losing patience, or not having enough hands for the task at hand. It is then when he attacks the feeling of guilt, unfairly. Be careful.
No one will understand you unless they have been through such an experience. There is always the feeling that you could do better and always keep your nerves under control. We are not perfect and whoever does everything he can is not obliged to do more.
It is worthwhile for the caregiver to report on the typical progression of the disease and then take each day as it comes. All patients are different and even with a lot of accumulated experience about the disease the caregiver must be prepared for what he did not expect.
Faced with the dilemma of caring for the patient at home or in a nursing home, I share these words from “Dance 1955”:
“How is it that there is so much ignorance in nursing homes hospitals etc etc.? When my husband was diagnosed with this disease I didn’t understand it either so I googled it.
Whenever I take him somewhere a nursing home/hospital I always give instructions/ information about the disease but it doesn’t get read they don’t have time so I have to spend all my time going in and eventually taking him home as it’s easier for me in the end.”
In our case, we decided to care for the patient at home. This implied a significant economic cost and a demanding personal dedication on the part of the caregivers, especially the leader caregiver. As well. On our case and circunstances I believe we did what was best for the patient, caregivers, and family members.
On april 2022 Bazooka111 contributed these meaty reflections with which I am completely in tune:
“I think I’m losing my mind as a caretaker. In fact, I feel like I have lost myself on this journey. Respite is my salvation.
We all have this mountain we are climbing, and some days feel like we are barely hanging on … I choose to focus on the good. I am not naive, I realize I am going to have to eventually say goodbye to my Mother from this dreadful disease —- but, I refuse to let anticipatory grief smother the days, weeks, months that I do have left.
Mental Health is important for the caregiver, but also for those we care for —- talk to them as if the disease isn’t present, make them feel included, share your day without requiring a response, offer insight on what is happening in the world …. Love them as you always have, and don’t allow this disease to rob them of some of the simple things that we as their caregiver can bring.
Choosing joy for me tends to burn away the pain.
Being a caregiver is something that no one will ever really understand, unless they have been there.”
Finally, reproducing the phrase of Anne Heady (PSP-HealthUnlocked): "Never forget to get plenty of rest, ask for help and most of all, ditch the guilt!"
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
To the caregivers 
How do you deal with stress?
Questions for USA PSP caregivers
I don't know what to do
