Scott, Volunteer Mentor @IndianaScott
Groups I FollowBrain TumorCaregiversChronic PainJust Want to Talk
Activity by Scott, Volunteer Mentor @IndianaScott
Hello @alois714. As I read your post I realized you highlight three important points for all caregivers to remember.
First, from my years working in research for the national Alzheimer's Association I know it is highly common, and some say expected, that any medical intervention with a dementia patient causes a noticeable stepdown in their abilities.
Second, again from my work with Alzheimer's' Association, 'sundowning' or the loss abilities and cognition late in the day is also very common and another unfortunate part of the disease. In my MIL's case we had to greatly adjust her day's schedule to avoid as much stimulation in the late afternoons and evenings as we could to ease the extra anxiety and agitation from the effects of this.
Third, and this is simply from my 14 years as the primary caregiver for my wife. I will say, as I have said before here, some days caregivers ARE given more than any caregiver can handle. This statement isn't actually even in the Bible, but be that as it may, know that some times and some days a single person simply cannot do it all. We must seek help in some form or another and that is A-OK!. It is not weakness nor a failure against some test. It is just the nature of the incredibly high demands of the 'job'.
I send you peace, strength, and courage!
Hi @anncgrl I, too, far too often felt the feelings of being overwhelmed, impatient, and tired, tired, tired!
I agree with you. Not a topic many want to acknowledge nor discuss, but one that is very common with dementia and other diseases as well. We can attack as best we can and only with the ammunition we have. Sharing is very valuable! Wish I had thought of caulking!
I send you strength.
Hello @conniesue2017 I am Scott and it is nice to e-meet you here. I am sorry to hear of all your travails in your caregiving. Caregiving can be a relentless, isolating, and highly demanding journey. I am glad you are here with us! I am not a medical professional, but I was the secondary caregiving for my MIL who had dementia and the primary caregiver for my wife for 14 years while she battled brain cancer, which manifested itself with many dementia-like symptoms.
In reading your wonderful and open post, I wanted to chime in and say I recognize many of the issues you are dealing with in my own caregiving journey.
First, I would say you may want to consider a bell on the front door so you hear it open and close. I used a cheap bell like the kind in old stores. When the door opens, it hits it and rings. Cheap, but effective. Also many Alzheimer's Associations' state chapters have a kind of registry/notification program with the local police for wandering patients. Perhaps this could offer some level of comfort too.
Next, and I am not judging here at all, just saying something I learned the hard way in my years of caregiving. Don't waste your energy waiting or wanting others to be different than they are. It is wasted energy. Early on I used too much of my limited energy wishing for my wife's condition to change, others to change, help out more, even just show me they cared. You cannot control any of these things, so I learned to save my energy for my patient. The disease takes the path it wants. Others in our lives also take the path's they want. Not the path we wish they would choose. In my case I have two sisters. They each came to visit only one time for an hour or so in the 14 years of my wife's disease. The vast majority of our 'friends' also disappeared. They each did what they wanted to, even if it was not what I wished they would have. Caregiving demands so very, very much of us caregivers we need all our strength and focus for the huge job entrusted to us.
I send you peace, strength, and courage.
Hello @whitey85 Good to e-meet you here. I am Scott and I was a secondary caregiver for my MIL who had FTD and was the primary caregiver for my wife for 14 years while she battled brain cancer, which also exhibited many aspects of dementia.
Based on my experience (and I am not a medical professional at all, just a well seasoned caregiver, that these types of phases/obsessions, etc. will come and go often. Some last awhile. Some leave as quickly as they appeared. Unfortunately, the disease seems to have a unique course all its own in each person it attacks. Frequently commonalities exist, but often not identical.
My wife was incontinent for her last several years and it was quite a battle. In my experience there was no option for changing the patient's behavior or desires, so all I could do was try and limit the impacts. First I got a rubber mattress cover for both the box spring and mattress. Then covered this with a fitted sheet to muffle the rustling. Then added rubberized pads under her for leaks. I also went to the hardware store and bought a very cheap hunk of carpet to put down on top of our bedroom carpet from the bed to the toilet. As this got too badly soiled I could just toss it away and get a new piece to replace it. I also used disposable thin pads we got from hospice (about 24" 24") all around the toilet and did the same with them. I taped the edges down to make for less chance of catching a toe or later wheelchair wheel. I also bought cartons of non-medical grade disposable gloves (I used U-Line), which finally saved my skin from all the scrubbing -- especially in the dry air of wintertime here. I also loved 3-M's product Avagard D (instant hand antiseptic with moisturizers). Very gentle and effective. We 'found' it because it was all over the place at Mayo and the nurses all swore by it. We ordered it through the drugstore at Mayo in Rochester over the phone.
I did find when I went up a size larger than the package suggested in the diapers she was using she was less likely to fuss with them.
Sorry for your travails with this. It is a tough one to deal with.
Peace and courage
Hi @hopeful33250 I noticed your question on nightmares vs. night terrors. YEP! In my experience they are two very different things.
Nightmares are what I call simply bad or scary dreams. Night terrors are something far more gut wrenching for me. I, too, am plagued by night terrors and they are nightmares times some unfortunate factor!
For me they involve being paralyzed, unable to move even a single muscle, eyelid, finger, etc. while a terrible, grotesque apparition straddles my chest screaming that if I do not move it will kill me. usually dripping blood, etc. down on me. They are seemingly unending, but when I do finally will myself to move, I wake bathed in sweat, heart pounding, often screaming, and with uncontrollable shakes. I have to get up and get myself into a totally different environment or they return when I lay back down. Usually I go for a walk, make a meal, or call some unfortunate friend at whatever hour it happens to be! I first experienced them in college and they continue to this day.
Hello @jkenser Nice to e-meet you here. I am Scott and while I have not had brain surgery nor am I a medical professional, I was the fulltime caregiver for my wife for 14 years while she battled her brain cancer. I will second the comment by @colleenyoung that six weeks is a very short time. I realize each case, cancer, and surgery are unique. However, in my wife's case she never felt exactly as she did prior to surgery. She finally felt 'at her best' after about 18 months. In addition to her PT and OT my wife found comfort in nature and meditation. In contemplation she found what peace and acceptance she could in her condition.
Strength and peace,
Good day, @dfelix I am Scott and it is nice to e-meet you here. I am sorry for the travails your sister is undergoing. I send peace, strength, and courage. My wife fought GBM for 14 years. After her diagnosis her tumor remained slow growing, then it suddenly accelerated. Due to the location and other considerations the only intervention she chose was an early resection. Even when her tumor got more aggressive at Stage IV she chose home hospice as her option. She defied the doctors' best guesses of 6 months or less and won her war for 14 months. Unfortunately I have no advice on newer technologies, but I am sure they are legion! I know Dr. Daniel Lachance at Mayo Rochester has been involved in some truly phenomenal research on DNA fighting approaches to brain cancer.
I was her 24/7 caregiver during her war so if you have any caregiving questions feel free to ask.
Hello @curlysunflowers Nice to e-meet you here and welcome to Connect!
I thank you for your kind words! I got a nice chuckle and nodded my head when I read your addition! Yes, yes, YES!
All too often, since caregiving can be so incredibly isolating, we need someone to, nonjudgmentally, simply know what we are going through!
I admire your dedication and your obvious hard work in you caregiving role!
Know I send you peace, strength, and courage every day!
Hi @anncgrl Scott here again. No caregiver can keep all the balls of caregiving in the air all the time. Like you, my wife and I were good housekeepers and while not cleanniks, we did keep our home clean and clutter-free. That went bye-bye when her demands increased and my time available stayed at only 24 hours a day 🙂 In our case, and this again is only in our case, my wife could not tolerate anyone else in our home and especially was sensitive to any smell in the house out of the ordinary. So while I did lots of wiping up with scent-free Clorox wipes, etc. You couldn't believe what our home looked like towards the end. I became an advocate of "out of sight out of mind". Luckily we have a downstairs and that became the repository for everything I did not have time to deal with. Offseason clothing, decorations, gifts that didn't work out or weren't needed at that point in my wife's journey. I simply told anyone who visited 'don't look downstairs and if you do, just ignore it.' Not a person ever commented. Family knew, in their hearts, I was on the verge of drowning in caregiving duties so the 'condition' of the house was secondary, or tertiary at best. I have not gotten our home back up to snuff yet, but I am working on it! You might find the attached photo of interest. This is what I needed!
Know that you must focus your energy on the critical caregiving needs. For me that was my wife's care, the bathrooms, kitchen, and washing clothes. All else, as I said, got pushed to the wayside.
Colleen's idea is great if you can manage it!
Peace and strength!
Hi again @anncgrl I will look up and see if I have the name in the records. It was a standard hospital bed, but the mattress was filled with air on a continual basis. This had multiple benefits of comfort, fewer bedsores, and with the moving of the air, keeping the patient cooler/warmer depending on the season. You can also alter the firmness. It is now the only mattress our local DME supply house stocks.
I wish you well with your struggle between your ADHD and the demands of your husband. In the case of my wife and MIL, keeping them on a very regular routine was incredibly important to my being able to keep their anxiety at anything close to a manageable level.
Hello @anncgrl Nice to e-meet you here. I am sorry to hear of your caregiving travails. You are totally correct! Caregiving ain't for wimps and it is often overwhelming when conflicting demands all fall on the caregiver at the same time. Seems to happen all too often!
I was one of the secondary caregivers for my MIL who had frontal temporal dementia and the primary caregiver for my wife for 14 years while she fought brain cancer, which gave her many dementia-like symptoms. I am not a medical professional in any way, shape, or form so what I say I only say from the perspective of a fellow caregiver.
In our case we did a couple of things around the stage you are at. First was to get a hospital bed to help contain my wife. We did one of the air mattress variety and while she was very upset at first, we had the hospice nurse tell her it was 'doctor's orders' and she accepted it. Made a huge difference and kept her safer by far.
One of the other things we did was introduce adult diapers and cut down on the layers of clothing. Easy on, easier off was my mantra. I also introduced drip pads on the floor next to the bed and in front of the toilet. Our hospice folks provided them for us by the packet and they were a godsend for easier clean up.
I heard the same warning from our nurses and kept hand soap on every sink, hand sanitizer on every counter. Still have bottles of the stuff hanging around the house, but no one who visited ever got ill nor did I. Caregiving is tough, caregiving when the caregiver is sick is nigh near impossible, so good for following that advice!
I am writing this at 3 am --- I still am up most nights as my body clock hasn't given up my caregiving routine yet. My wife has been gone 6 months now, but my GP says having been on a goofy schedule for so long it might take me quite awhile to reset my clock because I don't want to take any sleeps aids of any kind.
Remember this: "Courage does not always roar. Sometimes courage is the quite voice at the end of the day simply saying 'I will try again tomorrow.'"
Sending peace, strength, and courage!
Hello @mayflower7 I am Scott and I was a secondary caregiver for my MIL who suffered from dementia from the age of 52, as well as the primary caregiver for my wife who suffered from brain cancer for 14 years and struggled with many dementia-like symptoms. Let me say I am in no way any type of medical professional, so what I say only comes from my experiences as a caregiver and having worked for the Alzheimer's Association.
With my wife it was very important for me to take, and accept, my cues from her. I would often tell folks 'if I wanted to I could spend all day arguing over almost anything and everything'. Instead I picked only those 'battles' which were crucial, let her have her thoughts, and did my best to, more often than anything else, just 'be' with her. I allowed her view of reality to be her reality with me just along to keep her company and safe.
Given what you describe, it could be that the phone is causing your friend increased anxiety. Could be the sound of calls/texts coming in, could be new confusion at using the phone, could be the light in it, the interruptions (especially if she happens to be focusing on something else at the time). Plus things simply change without notice and at time any rhyme or reason. Unexpected interruptions in daily routine can be very challenging for many patients with dementia.
I wish you courage and strength!
Hello @hope4vickie Good to e-meet you here. Colleen is right, while I have not been in the identical situation as you are with your mom, my wife was in a coma for three weeks after her brain surgery. Unexpected, but ...
Waiting is beyond hard! We talked with my wife constantly and played some of her favorite songs while she was in her coma. She eventually did 'wake up' from it, but had lasting psychological and physical challenges. Some she was able to remediate, some not.
It is a tough time to be strong, but being there is what counts. I believe my wife knew we were there even though she did not remember anything about it.
We had to make many difficult end of life decisions later in her care so if you want to 'talk' with someone about those, I am here.
Peace, courage, and strength
@dawn_giacabazi I forgot to mention I am also taking 7.5 mg daily of meloxicam as an anti inflammatory.
Hi @dawn_giacabazi Sorry to hear about the troubles you are having with your hands. I have been diagnosed with severe carpel tunnel in both hands. Came from my years of lifting my wife dozens of times a day. While I am not a medical professional, here is what I have experienced, done, etc.
Two doctors and a third doctor/specialist have each confirmed the diagnosis. I just had the electrical stimulation test run on both hands, arms, and my neck. I've had more fun, but it is done.
I have no feeling in any finger tips up to the first knuckle. My thumbs go numb often and the pain radiates down into my hands and up towards my elbows. My grip strength is greatly reduced in both hands. Fine motor skills, such as shirt buttoning, shoelaces, etc. are a challenge.
Nights my hands felt like they were throbbing so hard I could see them. I could not sleep at all. Finally I bought a set of 3M "Futuro Night Wrist Sleep Support, adjustable". They gave me enough relief I can sleep some now. I am on my fourth set at this time. Love them, but the interior padding tends to get beaten down due to my grasping it in my sleep so I find better relief buying periodic replacements. Tried several of the gloves on the market, but they did not help me at all. I get mine via Amazon, cheaper than my local drug stores.
The medical recommendation is for surgery on both hands at separate times, but I am not psychologically ready for that, nor have I found the 'right' doc to perform it. It is not getting any worse and now that I am not doing the lifting any longer I am also doing a bit of waiting to see if nature can heal me at all. Especially since the surgeon here admitted surgery "may or may not relieve the symptoms and most likely will not restore feeling".
I have no magic bullet nor home remedies, except since cold makes my pain increase, I take some time to wrap my hands in warm towels out of the dryer when it gets really bad.
Peace & strength
Hello @bush Nice to e-meet you here. I am Scott and I was the primary caregiver for my wife who battled brain cancer for 14 years. I am sorry to hear about your mom's diagnosis.
I am not any kind of medical professional, so this comes solely from my experiences with my wife.
Step by step, my wife lost her independence due to her disease. The one thing she could continue to have any semblance of control over was her communications, visits, etc. I realized very early on the best thing I could do was listen. I understand your desire to have her talk with someone, but in my wife's case she did not want to until she was ready. Then it was only with certain people and for and at certain times. In her case it came down to one nurse and only one of her four siblings.
I am not saying this is right, all I am saying is this is what brought her comfort and come peace.
Just my two cents plain.
I send courage and strength to you all!
Hello @limbolady I am Scott and it is nice to e-meet you here. My MIL had frontal temporal dementia and I was one of her secondary caregivers during those years. I was also the primary caregiver for my wife for 14 years during her war with brain cancer during which she exhibited many aspects of dementia. I also worked for the national Alzheimer's Association for five years supporting their medical research.
I am always willing to share what I know if it can be of any help.
I send you peace, courage, and strength!