It's been a year

[Gingerw3]

Its been a year now. A year since we called 911 and had my husband transported to the hospital in a catatonic state. In some ways we are better off. Better because we know what is wrong. Better because everyone is safe and secure. Better because we found a coctail of meds that seem to keep the bad behaviors at bay. But on the other hand, watching the progression of this disease in one year has been so hard. Last September my husband was working and went on a business trip to Denver. Now he cannot shower or shave himself. He can still walk but falls often. His swallow is bad. We just modified his diet again. Even with that he coughs and chokes on his own saliva. He has hallucinations, some visual and some auditory. His cognition fluctuations are drastic. Some days he is quite lucid and begs to come home. He says he is all better (and perhaps it feels that way when he wakes up clear like that) But most days he is not clear. Of late his communication has really changed. He often will not even reply to a direct question. I know he hears it. I think the reply just doesn't come out. I think the kids and I are doing okay. Somedays its just too much. Yesterday was one of those. In two days he had hallucinations, a bad fall, figured out the code to locked door on his wing, took his razor completely apart, gave our personal information to a insurance telemarketing scam over the phone and then tells me last night that he is completely fine and wants to come home. Sigh. One day at a time and all that jazz. Today is a new day. Thanks for letting me ramble.

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You have been through the mill. It is exhausting dealing with theses diseases. Feel free to vent.

[LuisRodicioRodicio]

A big hug.

Luis

[LuisRodicioRodicio]

Hi Gingerw3!

I am thinking as caregiver I can give you some 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. 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.

From my 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 advisable.

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.”

As say JEN2017 “nobody could/should go through this hard disease alone. Especially the caregiver”.

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.

Big hug.

Luis

[Marilyn_cbd12]

Oh, Ginger, I hear you! Some days, when I think about the complete physical, social and financial devastation these conditions can bring, I want to shout, "Does anyone understand how horrible these diseases are?! Why aren't we doing something -- something dramatic-- about them?! " Forget about turning all the geniuses loose on developing the next fancy IPhone; let's get the brain trusts working on PSP and CBD and MSA.

Marilyn