I'm "it" to!

[ladydog255]

My husband has had PSP for at least 6 years and I'm the only caretaker he has. His 3 kids are 600 miles away, and don't call or visit. I don't leave him for more than an hour or 2 at a time, and often he calls looking for me. It makes for very long days. I pray alot.

[LuisRodicioRodicio]

Hi ladygog255!

I am sorry for your situation, which I find very worrying for you, who are the main and only caregiver.

It may seem stupid and obvious what I am going to tell you: "You urgently need important help and give a new direction to your work as a caregiver"

If your children cannot help you, seek help from the town hall, religious institutions, neighbors, friends,...

Below I submit for your consideration some comments that I have compiled in the 8.5 years that we have lived with the disease:

*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.

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, luck and courage.

Luis

[AJK2001]

So sorry to hear your situation. Luis has some very wise words. Do you have carers to help with the load? Or even someone to help with housework. Just to ease the load a little and bring some of the outside world to you, it could help you to feel less isolated. Is there a friend that could sit with your husband whilst you go out, so he doesn't fret and call you and you can relax and enjoy your "me time" without worrying.

Have you tried talking to his children and make them understand that really they should take an interest in their Dad, even if they are so far away.

Do take care or yourself xxx

[daddyt]

I hope you make the most of those two hours - you need it.

Tim