It is so exhausting, on Monday Rick fell while trying to pick up some crackers luckily it was just a small fall. Then he fell out of bed the next day, and then tonight he fell trying to reach for his walker.
I have had a tension headache since Sunday. I finally took today off hoping to get some rest which I did get some rest. I just feel so sad and I wish that my husband would just ask me if I was okay. Thanks for listening.
Hi Penny, I hear you! Being a caregiver is a thankless job without training. I haven’t experienced migraines in years, but over the last few weeks the horrific headaches have been relentless. I know it’s from stress and most of the time I feel like I have things under control, so I’m surprised that migraines are part of the picture now after all of this time. Hubby is on a fairly even plateau causing me to question my limitations.
My husband still thinks that he can kick the ball to our dog who is obsessed playing fetch. I’m waiting for hubby to misstep and fall. The other day he tried to pick the ball up off of the floor and he banged his head on the underside of the cabinet on his way back up. Today he tried to retrieve the ball from underneath the couch and caused his shoulder and back to spasm. Hubby’s thought process is completely gone and it’s so frustrating to witness him not understanding his own limitations. I’m tired of ALWAYS reminding him that what he is about to do is not a good idea. Or saying something to prevent a fall, but yet he continues to do what he intended to do. My words don’t reach him or he doesn’t understand me. Sorry, I think I’m losing it. Of course the headaches don’t help, unfortunately neither does Tylenol.
I’m glad that you were able to take a day off and get some rest. I should take a page out of your book and do the same.
❤️ I SewBears
Take care of yourself.
Fewer words are better for the male thought process with PSP or without it....I learned several good ways to communicate after our rehab stint which ended yesterday after several others ....have a discussion about safety first with a therapist present so they can support you with the ” safety always come first” theory ....when you see him doing anything that could cause a problem only say “is that a save move” and repeat several times if necessary.... don’t give him more than two choices like “recliner or bed” or fish or chicken for dinner “...my husband also had executive function dementia which affects his cognitive process but he’s still in there but takes longer to process words...the fewer the better....
You suffer with the headaches, I suffer with asthma which at times is uncontrollable no matter how much prednisone I’m on....it’s all stress related...we have to keep telling ourselves to take care of us FIRST, NO MATTER WHAT regardless of how difficult it is....hope this is helpful..
Sending hugs for both of us....Kathy
I too have Executive Function Dementia and can attest to the "keep it to just a couple of choices". It helps immeasurably. Safety is currently not an issue with me. I had to retire from many years working at Walt Disney World where safety is driven into you daily. My wife/caregiver however....😉
Oh SewBears....you touched a nerve. I am so tired of being the "nag." "Don't do that" "That's not safe" "You're going to fall" I know the disease makes the patient impulsive. I know the male ego makes my husband deny his limitations, but you would think with 6 broken ribs, a black eye, and a cut face....all from separate incidents...he would take care, but he doesn't.
Part of Executive Function Dementia is loss of self monitoring and self control. We can't help ourselves and unfortunately, no amount of telling us is going to change the outcome.
Hi....I have the same situation but have finally realized that he really doesn’t process many things and his short term memory is nil.....I said “ don’t do that because you fell and broke ribs when you tried it “. His reply was “ I didn’t not fall”and would continue to disagree with me to the point where it might not end on a pleasant note and it was only several weeks ago ...so I try not to cause a confrontation and just agree with him.....it’s easier and less stressful...
Agreed. I feel stress when my husband makes a bad decision and falls. He's doing things now that he wouldn't have attempted before PSP. I agree with others that PSP is the reason that the brain doesn't retain history of falls/injuries. Since I'm still working full time as a caregiver, I'm worrying what he's trying to do while I'm not home. It's funny, he will tell me he fell - but in his mind, it had nothing to do with PSP. As for me, the nag, I find I'm tired all the time, I clench my jaws, and I have tremors, which get worse with stress and fatigue. The term I'm hearing here in Pa, in our disabilities training is Compassion Fatigue. I personally believe some of all of our brain and inflammation issues can be helped quickly with a better diet and focus on nutrients, which a competent nutritionist should know about. But I admit, in winter in Pa., I've have succumbed to a bad comfort food habit. I know it added to my problems caring for others. Now, I have to buckle down and stick to healthy fresh food, get out to walk and see the ocean ,which for me is healing. For mental health, I found a local group to go to learn about coping and ways to get help: daughterhood.org
Talking to others face to face lifts a lot of weight. Not feeling alone in this feels comforting.
I do so understand! Yesterday I was down with the migraine John did what he could, but didn't really understand why I couldn't/wouldn't go to lunch with him. (We live in an independent living facility where they provide all our meals etc.). Today he hasn't gotten out of bed, saying his head feels like it's gonna burst!
😢
Hello! I feel terrible for both of you. Headaches can come from your jaw. My worst headaches have been from clenching! Which I had from watching my poor father deal with PSP. My mother was always angry and yelling at him. And the headaches were sometimes unbearable. But I would stay quiet in hopes of calming her down. Try saying the vowels around over and over opening your mouth wide
God bless you both
Saying the vowels wide and super over exaggerated helped a lot! I also rubbed some Aspercream around the jaw, ear, shoulder and the side/back of my neck. For added measure I gave myself some Children’s liquid Benadryl and finally felt better. Had a good nights sleep too. Thank you for sharing the “vowel” trick. I think I was on my way to some serious TMJ issues because the jaw cracking was pretty intense. Migraine is at bay. Yeah!
It is exhausting being on call 24 hours a day 7 days a week. The waiting for the other shoe to drop at any time. Hope you get some relief from the headache.
Penny, sending you my understanding and asking... Are you OK?
We here care!
Thanks
This is not an easy road to travel. It is filled with bumps, potholes, twists and turns. Getting a break in is good. I know you wish your husband would take your feelings into consideration and ask how you are but quiet honestly it probably never occurs to him now.
Ron
So true thanks
Hi penny1956!
Sending you my understanding and our experiences about caregivers.
*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. As Jeff166 said: It is exhausting being on call 24 hours a day 7 days a week.
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.
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.
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.
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: "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
Hi Penny,
I understand, it's so hard and frustrating to see our loved ones like that and not be able to do anything to stop it.
Just rest as much as you can and if you can get some respite of any kind, an hour, an afternoon, a day, take it !
I really miss my hubby but would not wish to go through that again.
Take care of yourself.
Sending you big hugs !
Dawn, xx
I understand completely penny.... I felt as though I was nagging ,constantly watching him and telling him not to do certain things . All for his safety but it must have been annoying .
As his carer I’m pretty much housebound with him as I daren’t /don’t want to leave him on his own . Our poor dog and I don’t get out for many walks these days but with the wet and windy weather we’ve had ,the dog doesn’t seem to mind .
Do try and get carers in , and maybe a friend to sit and chat while you have time to yourself . The occasions I have , make a difference
Sending big hug and much love, with all the FULL understanding, that only one of us can give you! Get more rest.
Lots of love
Anne
It tough specially when they keep trying to do things on their own when they actually need someone there to ensure their safety. Somehow you find a way through, don't ask me how. Are you getting any help and support at all, I do hope so.
Sending love
Kate xxx
Dear Penny, sooner or later you will have to think about a geriatric. Since the decision, it took me 8 months to find the right institution, came over my own health problems and convince my sister to move. Nevertheless, I couldn't avoid a terrible feeling of guilty.
Try to take 1 or 2 rest days a week. Ask for psychologic help for yourself. Take care. Good luck. Warm regards
Elena
Hello! My father had PSP. He passed away in April. My mother was his caretaker and reminded my sisters and I of it all the time
I had terrible headaches and realized they were coming from my jaw from all the clenching when awake and sleeping. People with stress tend to grind at night as well. And if grind at night you are sure to be grinding while awake as well My mother was always angry and it put pressure on all of us to just say or suggestion nothing.
Please try saying that vowels with an open wide mouth. It works for me. I hope it does for you as well. And whistling can make it a little more fun
Please take care of yourself
Xoxo
When I got my stress headaches—generated from hunched shoulders and a tight jaw—I scheduled a massage to work the kinks out. I couldn’t afford them as much as I would have liked, but when I could...I felt like a new woman afterward.
As you well know, caregiving is not for the faint of heart. You are dealing with things your friends and family can’t even imagine—unless they’ve been down in the trenches with you. I loved the well meaning comments of “can’t you just put him in a nursing home?” My standard answer was always “and how in the hell do you think I can afford that?!?” Not so affordable for folks in the US with limited resources.
Anyway, as has been stated, please make sure you take time for yourself. Break away and take yourself to a movie...out to dinner...shopping—whatever strikes your fancy. Just a small break can save your sanity, and by golly—you are worth it!
PSP Story With A Touch Of Humor #4
PSP can be easily managed.
PSP
Cognitive problems related to PSP
PSP + Morphine?
