Compassion fatigue

[Cinderella80]

Hi friends hope you are all keeping strong. I have been ooloking into something called compassion fatigue.It makes so much sense to me. Professional carers and carers in general can suffer from this. I know it relates to me. We are so exhausted that even a happy matter is so hard to be happy about. We can Isolate our selves from people because we put all our compassion for the people we care for we actually run out of feelings for others.I know it's relates to me. I don't want to open the door to anyone because I have no energy for anyone not even for myself. The moments I have to myself which are not very often I like to just sit and maybe watch a bit of telly. My sister in law that lives with us can't understand. Even though I do everything including the housework. I'm sure so many of you all will understand and relate. Keep strong my friends and hugs and love to you all

[Hidden]

I totally understand. I am so exhausted, I can’t stand to think of doing anything extra. It’s like my mind wants to shut down.

[LuisRodicioRodicio]

Hi Cinderella80!

Some reflections and suggestions....

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 relatively frequent that a situation, a small accident, a major difficulty, a rebellion of the patient puts the caregiver on the verge of losing his nerve. Leaving the place for 10 seconds and thinking that the enemy is the PSP and not the patient, can avoid difficult situations to regret.

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 (active participant in PSP-HealthUnlocked): "Never forget to get plenty of rest, ask for help and most of all, ditch the guilt!"

I hope and I wish these notes are useful.

Hug and courage.

Luis

[Stella315 in reply to LuisRodicioRodicio]

Hi Luis your passage above really touched me because my mother just entered Hospice and thought of her passing is so daunting it keeps me awake all night. I want to be present but my anguish and anxiety of trying to still fight for her overweighs all other emotions. Its like am endless race that full of grief. I am torn by giving food or not because she was in hospital due to influenza A and now pneumonia. Any advice ?

[LuisRodicioRodicio in reply to Stella315]

Hi Stella315!

Patient on the last moments can still hear you. Even if a person is non-responsive, encourage each person who is significant to the dying person to go in individually and talk to the person who is dying. Say what’s in your heart. The person in that situation has been processing her life — what has this been all about?

Think “I understand you have to go.” We can all help that person let go.

Dying is not a medical event. It is a social, communal event. You just need someone who can support and guide you in those moments, doctors and nurses included.

"COCaregiver" shared with all of us this phrase that she said to her husband in her last moments:

"Light and Love are waiting for you, Honey. Go to the Light and Love and be at peace. And know that I love you so very much."

Abig hug and luck.

Luis

[Richard33]

Cinderella,

You know you must try to get time away from caring to recharge your batteries. But it sounds that maybe that is difficult. I have brought a video baby monitor so at least I can be in a different room in the house relaxing and still keep an eye on Ruth.

You are doing an amazing job but keep trying to get help.

Richard x 🙂

[MRSYafffle]

This was me but due to yet another fall in January mum has had to go into a nursing home. That amount to a couple of months of unbelievable stress and exhaustion as I was the only person who could see her but in the end I have regained some balance.

It' s so difficult for carers especially doing everything else.

Can you get any respite xx

Sending loats of love xx