Do any of the professionals involved in yo... - PSP Association
Do any of the professionals involved in your care act as a key worker or named point of contact, to coordinate your care & provide support?
Parkinsons Nurse first class at managing all care central point of contact
Good question my answer was no but i regard my GP as the named person . Wishful thinking perhaps?
Poss GP but it would be a good idea to have a named person.
I wish . everything o have had had been because of finding my own way around the SYSTEM . it's like living in Limbo !!
Excellent support from GP and Neurologist.
I HAVE C/G'S THAT DON'T KNOW ANYTHING ABOUT PSP MY MAIN PROBLEM IS MY DAUGHTER SHE IS ALWAYS WHIT ME WHEN I GO TO MY DOCTOR OR I SOMEONE TRIES TO AS HOW I AM SHE WILL THEM THAT I IMAGINE THAT I AM DWELLING ON MY SPIT TOO MUCH AND THAT SHOULD I SHOULD SWALLOW IT LIKE SHE DOES I GET FRUSTRATED. & TELL HR TO SHUT UP THEN SE TELLS ME THAT I AM RUDE. SHE IS 60 YRS OLD & SHE IS DRIVING ME CRAZY. SHE IS ABRUPT WHEN I ASK HE FOR SOMETHING OR
IF I HAVE A QUESTION, I
WHAT DO I DO I ???
.
Thank her for accompanying you to the doctor. Ask her to step out of the room so you can consult your doctor alone. It is your right. She is in denial. She needs support to face her own grief, but she won't admit it. Last year, I was so overwhelmed, I participated in a GriefShare course at a local church, to get a handle on the overwhelming feelings I was experiencing. I am 61 year old daughter and caregiver.
Ask your doctor for a social work/counseling referral for her or the two of you. There will be things you want to tell your daughter. You may need a third party to help give you the space and place to communicate with her. There are safety issues associated with being a supportive caring family members. Until she can let you speak freely and tell your symptoms, you are not getting the best medical care and therefore you are not safe.
If a counselor or social worker is not possible, your attorney or minister could help. Hospice social workers can also help. Since you typed your own entry, you may not be ready for hospice yet. Also, a local chapter of the Parkinson's Association or Alzheimer's Association may be able to help. Our AA had a licensed social worker that helped us for free.
P.S. What are c/gs?
Remember you are her father it is up to you ! Does she live in your home? You have more experience than her
She cares for you and loves you. Who would want the abuse?
Hand over from hosp to care home was terrible -care home told 'Nil by mouth' and it should have been 'soft food and some sips'. To cap it all it took them a week to get SALT from Community Trust to respond - apparently there was a bank holiday? So a resounding NO.
Coordination of care is the exception, not the rule.
When my dad started falling down the stairs of his 3500 square foot home, we became concerned. His PCP did not seem to take his health needs very seriously, but finally referred him to a neurologist. It took 3 or 4 different neurologists to make the move from Parkinson's to PSP. Dr. Seth Cahn attempted to prescribe medications for Parkinson's that did not work for PSP. So, dad was weaned off those meds and we found a different neurologist.
We contacted the IU Neuroscience Center and are meeting with our second neurologist there. meanwhile, mom and dad moved from independent living, to assisted living and now Dad is in his second skilled nursing facility, where after 63 years of marriage, he is separated from his wife. We had to leave a wonderful PCP specializing in gerontology through Eskanazi Hospital, Dr. Glenda Westmoreland. Her office provided social work and nursing support. When Dad first moved into skilled nursing, we were told that that their in house physician would serve as dad's PCP. In the 9 months Dad was there, their Dr. Riley never once spoke to or met my father. The facility was consistently short staffed. Therapy services would start and then be discontinued after a few weeks due to "lack of improvement" necessary for Medicare reimbursement.
It is extremely hard to transport my dad to his neurologist, opthamologist, urologist, etc. For seven months, he has been in a new cottage style skilled care facility. However, there has been staff turn over. They are allopathic, and don't understand dad's food sensitivities. By insisting that he can eat dairy and grains, they puree unidentifiable high carb foods which he is borderline allergic to. This aggravates his choking and swallowing problems. He spends a lot of energy choking and coughing up clear slime. Since he can't have thick-it, they started on a guargum thickener. It appears that he has developed a food sensitivity to that.
Two weeks ago, he began a sharp decline, sleeping 24/7. We were very concerned. He could hardly talk, eat or anything. His urine was amber and had strong odor. I suspected a UTI. However, urinalysis showed anemia and kidney abnormalities in creatinine and something else.....all related to dehydration. Although dehydration is common in seniors, I see it as neglect. I broiled up and pureed a steak and blended whole vegetable and fruit smoothies using a banana as a thickener. He showed marked improvement in 36 hours.
My mom visits him daily. We siblings have a schedule of evening visits. I thank God daily that my dad had the foresight to invest in long term care insurance to help pay for care he thought he would never need. However, there is no guarantee of excellent care. We pay someone we really like to visit him four days a week in the morning. She helps with toileting, feeding and mostly provides conversation to keep his mind active. My mom covers the afternoon. We pick up the slack.
It is so sad that my dad worked so long and so hard, and no matter what you pay or where you pay it, care promised (therapies, social interaction, programs, etc.) is seldom what is delivered (basic borderline primary care.)
My dad agreed to skilled nursing after falling on my tiny mom several times, many arguments between siblings over what he needed and what we could provide nearly divided the family. I pulled muscles over and over, lifting, toileting, showering him.....and now staff are supposed to do these things. He needs help with all of his ADLs and struggles to feed himself, so he needs assistance. In 18 months, Dad has dropped from 265 to 176 pounds. he needs to use the toilet, rather than sit in soiled adult depends. He needs a real shower, rather than a PTA sponging.
We love our dad. We want the best for him. We want answers. We want to know what works and what stage of the disease he is at. We want advice about the choking/swallowing risks....we are scared of going back to a PEG tube. How can we trust staff to clean out the PEG tube when they don't handle his nebulizer, oxygen or suctioning equipment with any level of sanitation? How can we trust the dietician to provide gluten and dairy free liquid meals when they don't believe in anything naturopathic or any recent nutrition research? How can we trust staff to properly monitor PEG tube feedings, when they won't mark a simple in and out chart or take him to the bathroom when he needs to or wants to go?
I have a palliative care nurse as first point of call. Day to day situations I can also contact District Nurses.
Jenny Reynolds PSPA nurse also contacts me from time to time.
Advice and understanding is what I crave
At every single appointment we are having to repeat everything every single time.
