Sam 1947

[aleia123]

. Hello everyone I am new to this sight. My husband has psp since 2015. Was diagnose 2017. I have notice there is a big change in him this week aggressive and hallucinating. I think this is another stage in this illness. I am very exhausted and don’t have much help as my kids lives far away. My prayers goes out to everyone suffering with this incurable disease. Thank you.

[Hidden]

Welcome to the site. Sorry you are here. The exhaustion we all understand all too well. Hopefully your husband’s aggression and hallucinations will pass on their own. Do tell your doctor about them. He may have an infection which is causing them.

[enjoysalud]

Hi, I am sorry for what you are going through....you probably have little energy or time (being the sole caretaker).

You might get more responses if you tell us a little of yourself.....especially on your profile. Where are you located? Who is your health provider? Tell us a little of your husband and of yourself. As you have come to find out, people from all over the world share on this site.

If you click on the circle ,next to our name, it will take you to our profile. I am a 79 year old mother who lost a son , 55 years of age, May 4, 2017.

Los Angeles, CA, USA

[JA10]

Hi, as already suggested if hallucinations are not normal, I would definitely get the possibility of a UTI checked out, they are vicious infections. My Mum's specialist told us that the symptoms that you initially present with will get worse, but you don't usually get different ones as the PSP progresses.

Julie

[aleia123 in reply to JA10]

Hi good morning. My husband had a thorough check up at the emergency couple days age no urinal tr@ck infection. I read hallucinations is part of psp. Thanks for the helpful information.

[Hidden]

Welcome to our group of understanding friends...

So sorry you & hubby are dealing with PSP. My mom had PSP & like so many folks we had never heard of it. Mom never had hallucinations - definitely check for UTI. Aggression seemed to come & go... mainly PSP ugly words.

I hope you have a friend or two that can help support you... even if it is just sharing a tea time or coffee chat.

Sending you & hubby hugs... Granni B

[aleia123 in reply to Hidden]

Hello Mottsie. 5h@nks for your advice. I do attend a group which is very helpful and also get me out of the house. First time in my life I am living alone.

[Dadshelper]

Welcome to the site. I noticed with Dad, CBD, his changes were like stair steps not a gradual decline. Some changes would almost seem to happen overnight. Try getting outside help even if only a few hours, you need "me" time.

Ron

[Tippyleaf]

Dear Aleia

Welcome - though sorry you have had to join us. My hubby became very aggressive very early in the disease and whilst he had significant sleep disturbances with nightmares he very rarely suffered with hallucinations. So worth checking out the latter in case of underlying infection.

The aggression we learnt to live with, antidepressants, Neuro psychiatry, counselling and learning to recognise the triggers helped then later he was prescribed antipsychotic meds which made a huge difference. We had been reluctant to use the antipsychotic meds which were suggested 2 years before as we were told they would sedate him as he was so incredibly impulsive and feisty it seemed not too but did take away prob 80% of the aggression.

Do be as open and honest with the Neurologist regarding all symptoms - worth discussing what needs to be said before the hospital appointment with your husband so he has chance to think about your concerns without causing an aggressive outburst.

Please look after yourself too - try to carve out time for yourself and get all the help you need .

Welcome again - this site was a sanity saver for me and I hope you will find lots of support here too

Love Tippy

[LuisRodicioRodicio]

Hi aleia123!

- Delusions, hallucinations at times; may be disoriented and not know where they are. Hallucinations may be related to infections in the urine. Hallucinations have also been described in the case of infection before the onset of fever. Also with low acetylcholine levels and acetylcholine (muscarinic) receptors as well as drugs that are out of balance, too strong, etc.

Hug and luck.

Luis

[LuisRodicioRodicio]

Hi aleia 123!

Some thoughts on the primary caregiver that can be usefu:

*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.

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.

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 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.”

As say JEN2017 “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”.

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.

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.

Hugs and luck.

Luis

[aleia123 in reply to LuisRodicioRodicio]

Hello and thank you for taking the time to reply to me. If I go anywhere I feel the guilt because we did everything together. Having trouble sleeping and very exhausted. I @m in a group which is very helpful and I am grateful for.