I currently take care of a friend who has been diagnosed with PSP. I am an RN and work with her 9-10 hours a day 5 days a week. I am trying very hard to be L's advocate, friend as well as daily caregiver to the Best of my ability. I find it challenging at times to keep upbeat and positive only due to the depressive and negative attitude that most days overwhelms L's mindset. Do you or anyone reading this have suggestions regarding these type of struggles? She is obviously the one living through this terrible diagnosis of PSP and its miriad of symptoms, but I do get sad watching her use so much energy thinking negatively most of the time. Her memories of current happy moments is fleeting. They are not easily recalled. As a result she keeps thinking she has nothing to live for. I have been taking photo shots of times she obviously is expressing smiles, laughing etc in order to be able to visually remind her of Good Times.
It's a nasty cycle and joy robbing disease that is robbing her from "living in the present"
She is already on many medicines, some of which are to help with Depression, but this is the type that brings that word to a new level.
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bjs3boys
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Well it wasn't such a good idea of mine to suggest you repost on a new thread. Sorry.
I am a little taken aback that you first post, "Botox Injections" said that you were caring for a friend. I thought, "What a wonderful thing."
Now you appear to be a nurse being employed to care.
As far as I am concerned you are welcome here. But a nurse is not a friend and even though you may have a good relationship and feel friendship.
I am a little concerned about you photographing her and showing her the photos with her smiling or being happy. It would appear to me to be the best way to discourage her from smiling and being relaxed, because she will quickly find that those times will be thrown back at her, when she is feeling less positive, as a seeming challenge rather than her current mood being accepted and worked through. Have I misunderstood you?
Does she not have a photo album you could go through with her and for her to tell you about those good times in the photos? Are you doing reminiscing?
Does she get to go out, into town, or something? That is often a great boost comapred to being inside all day.
Caring for someone with PSP is tough for both family members and professionals. I am sure it is tough for you.
Hi, PSP is a terminal illness. The research states 3-5 years, although many caretakers who share on this site have loved one's who have gone beyond the 5 years.
I had a son diagnosed with PSP who died last May 4, 2017. He lasted a little over three years.
Is this your first caretaking assignment with one who has a terminal illness?
Does your friend have NO FAMILY? I ask this because if L has family I would discuss and ask them what their wishes are concerning L's state of mind.
As the mom of one who died with PSP, who both of us knew he had a terminal illness, I found many of my son's remorse and thoughts were a valid reality for him, not to mention physiological manifestations of his neurological condition.
I did not want to substitute MY REALITY ( a healthy, at that time, 77 year old mom) for HIS REALITY of a 54 year old with much suffering and incapacity, cut off from the activities he enjoyed when in health.
As an RN who works 9-10 hours 5 days a week, I am deducing that you get two days off, away from L who is ill with PSP and cannot escape her condition.
ARE YOUR BEING PAID? If the answer is "yes" then you need to research this illness and understand that the sadness that you feel is an occupational hazard, and should not, must not, interfere with the paid care that L deserves.
I would suggest, if possible, that you get her to share her thoughts, her happiest and saddest memories, her thoughts on friends and family. If you were terminal and depressed/sad HOW would you want to be treated? Perhaps this is how she would want you to treat her.
If the glare of the outdoors does not bother her, daily walks in the afternoon and morning would be helpful. Can she verbally communicate?
I had a young male PAID caretaker, five days a week, 24 hours a day, for the last three months of my son's life. He has been so affected with my son's death, his attachment to my son, that he has given up caretaking.....I do not know for how long. So far, It has been a full year in an entirely other occupation.
If this is a work assignment perhaps there are things you will learn about yourself that will help you in the future.
At some point your cared for friend is going to loose capacity. This might put you into an exposed position.
If she has no relatives or advocate then I strongly recommend you talk to her about appointing a solicitor to draw up Lasting Powers of Attorney for Heath and Welfare and Finances with the solicitor acting as attorney. This will protect you. When her estate eventually goes to probate it will be examined. You really need to protect yourself.
I know the case! My patient with PSP has always seen the "half empty bottle". It is normal for the PSP patient to become depressed but I try to relieve the harshness of the disease to the patient and the caregivers since the depression can be "contagious":
1) Antidepressant medication. In our case Sertralina 50. Trying CBD Oil.
2) Choose external caregivers with good humor, positive, as well as professionals. Difficult but possible
3) Take care of the menus of the meals. Satisfy the tastes of patient avoiding menus prone to diarrhea or constipation.
4) Provide periodic vacation spaces "outside the PSP environment" to "all" caregivers.
5) Have a daily program of physical exercises for the patient.
6) "To socialize the patient":
Almost every afternoon, social activity: cinema, city walk, show, museum, conference, meeting with grandchildren, snack with friends, parties, etc. After these events she needs to rest. It is advisable to have holidays in places where the moderate climate allows you to go out on the street and do walks for exercise as well as to socialize.
•Journeys by car must be adapted to transport the patient and the wheelchair.
•Difficulty in following the cadence of a normal conversation, being treated as a child, or being the object of special attention because of his/her illness and not seen as the person who is locked inside that jail that is the PSP, produces feelings of frustration and humiliation. You have to try to avoid those situations but keep attending social events because, although usually resisting to get out of the routine, at the end the person with PSP normally has a very good time.
•In the event of trouble to handle the food (spaghetti, salad, etc.) or in a restaurant with companion who are NOT relatives (for instance: former university colleagues, etc.) and due to the velocity in serving meals, it is very likely that a person with PSP will need help to avoid a severe delay and therefore an uncomfortable situation. This can create feelings of humiliation. Next time we must try to select the type of food and attend meals in which the rhythm could be very flexible.
By private-internal mail I am sending my experiences with PSP in case they can be useful.
I'm afraid you may have been misunderstood. I don't see any conflict between being a nurse AND a friend, and commend you for your caring, whichever relationship came first. I was lucky, in that my guy was naturally of a positive mindset, and willing to be jollied along. The disease can change patients' personalities for the worse, and many here report struggles like yours. I have yet to learn of a good solution. Antidepressant medications are often used. I think your showing photos to try to evoke happy memories is a good idea. Can L be entertained by other visitors ( even paid ones) ? Can she get outside at all? Does she like music?
I wish I had good advice for you. Please don't be discouraged from being here on this site. Every bit of information anyone adds to the conversation is to the advantage of all of us.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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