anyone experienced long periods of sleep, i care for my mother im on a massive emotional rollercoster no 2 days the same we had restless nights agitation swallow issues pain constant crying freezing not able to move no words come out staring at ceiling fiddling with things pretend knitting just doing the motions then last 9 days bad chest infection constant stream of hosital at home teams coming as mum as peace doc in place,so not taken to hospital ,im afraid if mum get this again as im convinced its aspiration that caused it they need to take her into hospital as she lives with me and my family and it has been so tough last week ,i was told her potassium high and her heart could stop at any moment i really thought she was a gonner but today she has been discharged back to her gp.now dealing with her not talking staring back pain and sleeping a lot she has done this before then pain goes this psp is crazy mum has lots f health issues copd heart failure kidneys not good diabetes but i think this psp is worse of all even her carers who come im 3 times a day struggle as no 2 days alike , i dont know how this will end?
sleep: anyone experienced long periods of... - PSP Association
sleep
Hi there. Yes my Dad (in a resthome) sleeps a lot. I posted it on here before Xmas....he slept for nearly nine days. He wouldnt even open his eyes to eat, but if you put a spoon to his mouth, he could feel it and chew and swallow OK, but he could not tell you what he ate. I thought he was going, but he has since perked back up, but he sleeps a lot during the day. The fluctuations are indeed frustrating, and it is a suffering I wish on no one. I do hope his end is not far. All the best.
i hope same for mum i hate saying it but i want it over for her take carexx
I feel your emotional, physical and disappointing distress. I have been caregiving for one month and now indeed anxiety meds. I will not let this get to me,I have chronic health conditions and they have worsened in one month.
I am relying on faith and hope that my caregiving does not kill me. The Lord prepared for their physical work but not the mental. I really hate stubbornness and not following directions and making my job harder. This is the first time I have been able to express my feelings. I took him out of a neglectful nursing home and he will not go into long term care unless it really gets to where my health is in jeopardy.
I pray for patience, guidance and have the fruits of the Holy Spirit posted all over my small dwelling.
Hi jeannette1964!
*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.
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 luck.
Luis
very helpful thankyou my immediate family very supportive , my sister thinks a weekend away is a holiday no a recharge , they dont get it i have great carers three times but mum is very poorly now i fear she has become bedbound such horrible illness thanks for kind words of supportxxx
Sending love and support to you, Jeannette. I lost my husband to PSP last August and it was such a blessed release from a most dreadful illness. So little is known about these different neurological diseases of which one becomes an expert through necessity. Now focus on yourself and your family. The grieving process is strange and difficult but you did your mum proud. Remember that. Susanne xx
thankyou for kind words i loved my mum dearly but im glad shes released i feel lost as ive been caring for quite a while im fine of course certain thing upset me thats normal i can now focus on my family my wonderful grandchildren who i had neglected a bit due to looking after mum what a journey im expert on psp now love too allxxxx
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