I'm a 41-year-old male caring for my almost 77-year mother, who is almost at an advanced stage - she cannot feed herself, make her toilet, or walk on her own. (I have posted here before, but I have logged myself out the previous account.)
Sometimes mom is okay physically, which makes us feel elated; then, out of of the blue, it feels like she is unable to control her legs, ready to collapse in a jiffy.
Maybe, scared of her falling to the ground, I often find myself somehow assertively encouraging her to hold on a bit. Right after that, I feel guilty because it makes no sense urging her to fight off her frailty.
On a separate note, my mom lives with my 79-year old father. I regularly come on weekends - Friday evening to Monday morning - in order to help with mom and the rest. I also spent most of my 1-month leave with them. My brothers live in the same building with my parents, and they can be of help from time to time. We also have a lady that cares for my mother 08 am-2 pm, doing also the cooking, and the like.
Now, coming back to mom's "unexpected" feebleness and my occasional moments of impatience/frustration, am I perhaps not willing to accept the fact that the end may be near, or what?
Thanks for any input.
If you think she’ll die soon, get hospice involved.
I don’t think she’ll die soon. This can go on for years.
You should ask her doctor for diagnosis, prognosis…
See a neurologist? She might have Parkinson’s.
Know the various illnesses she suffers from. That’ll also determine what attitude is appropriate towards her.
“We also have a lady that cares for my mother 08 am-2 pm”
I think your mom needs more hours help.
My friend’s mom has trouble walking. My friend hired caregivers throughout the day. Now she’s not scared of falling, because a caregiver always helps her walk and makes sure she doesn’t fall.
First is impatience and frustration.
It is impossible to care for someone and not get impatient and or frustrated. Anger is also common.
I will get the numbers wrong but the gist of it is the same.
The facilitator of my Support Group gave us all a printout that had this statistic:
80% of caregivers admit to getting angry at the person they are caring for.
My comment to the group was this.
"That means 20% of those responding lied"
Anger, frustration, impatience is natural, normal reaction that a human has.
Now, what you do to control that is the important thing.
Leave the room if it is safe to do so.
Step away for a bit.
redirect and try something different.
The other thing you mention is your feelings of "guilt" because of her frailty.
YOU did not cause it. So you can not feel guilty. You can feel sadness, grief, you can be scared. But not "guilty"
If you do not have a Gait Belt get one.
A gait belt will help you more safely support mom.
Don't try to hold her up or prevent her from falling. Look at how to safely guide her to the floor if she begins to fall.
If she falls don't try to pick her up. It seems silly if you are strong and physically fit to call 911 for a "LIFT ASSIST" but the responders are trained to help someone up and to get that person into a chair or bed and they can assess if there is a need to go to the hospital. You can decline the hospital, they will have you sign paperwork and they will be on their way. In most cases if there is not trip to the hospital there will be no charge for the LIFT ASSIST. The good thing is they are now aware that there is a person with special needs residing at that address.
The unexpected moments she may be having could be due to any number of things. Low blood pressure. Dehydration,
There are lots of things that indicate when someone is at End of Life.
It sounds like your mom would qualify for Hospice (Hospice is not just the last 6 months) you and your family will get more help and equipment that will make caring for mom a lot safer and easier. A call to a Hospice just to talk to them, let them assess and let them inform you of what they can do to help. Well worth a phone call.
And the thought that you are going to lose mom is on your mind.
It is sad, and you are experiencing anticipatory grief. You are realizing that your parents are old and they will not be around forever. And that hurts.
I don't live in the US, and everything is managed within the family - no state assistance.
When my mom began to fall it was never a trip, it was a sudden loss of the strength to bear her own weight and a slow sinking to the floor as I grabbed her waistband and screamed "STAND. STAND. STAND UP!!!". Not some of my most stellar moments.
I'm going to suggest some physical therapy for your mom, I was amazed at the helpfulness of some very simple exercises. Elder Gym has a good list and demonstrations.
What baffles me is that my mom sometimes walks steadily when helped, of course, but at times she cannot control her feet. Could it be my fear of the worst why l occasionally urge her to be a bit in control of her feet?! I'm wondering so...
“she cannot control her feet”
As you wrote, she can’t control it.
“l occasionally urge her to be a bit in control of her feet”
She can’t control it.
OP, the reason you’re doing this is because you’re impatient, feel frustrated, you’re in a hurry, you want to get things done fast, you want her to move faster.
I think your mom should see a doctor, neurologist. Find out what physical problems she has.
Thanks for the valuable input.
I think you're being too hard on yourself - this is all new territory for you in learning how to assist in your mom's care...it's a lot for anyone to process. So my advise is more for you to be easy on yourself - don't expect perfection from yourself in dealing with all these new challenges - and for sure, take any feelings of guilt out of the equation. You don't deserve that. And, take good care and be kind to yourself thru this.
..and regarding your description - I actually don't see your actions as being "impatient" - it sounds like you were just trying to encourage her in case that helped - you're learning thru this process.
Does Mom suffer from diabetes? If so she may have neuropathy in her ankles and feet. My Mom did. Nothing Mom can do about that. And trying to tell her to be careful is falling on deaf ears. Also her Dementia could be causing the problem of falling. My Mom was in a wheelchair the last 5 months of her life. With neuropathy, there is no knowing its coming on, you just drop like a bag of potatoes.
You aren't a god; you aren't in a state of perfection. We are all human with human frailties and limitations, and it's a kind of hubris to think we can raise above the fray and always act with perfection. We all take ourselves to task all the time for our failings if we are decent and good people struggling to do right, and we are OK with that. But when we let down our parents it stings like needles.
You are doing fine. Try to be easier on yourself. You are all trying to do what you can. Do also know that frustration and depression OFTEN manifests as anger. Flashes of instant anger that can make us question who and what we are. You are already working this out in your head and I have complete trust in your doing so.
Good luck, guy. I am sorry for all that all of you are going through. This is one difficult passage for everyone. Try always to insert humor into it.
At the last moments of her life my mom struggled to tell me the old adage "I may not have been as good as I SHOULD have been, but I was a good as I COULD be". The words, the saying was going south in every way there was due to her frail weakness and her mind reeling. Finally she let out a gentle laugh and she softly said "Ohhhhhh. YOU know what I mean", and our last moments were a gentle laughter of understanding. I would bet your Mom understands, too.
When I had my moments, I would talk to myself why I was impatient that moment, confess the truth and forgive myself and think of how it might be better next time and let it go.
I don’t believe in gait belts. I find them awkward and useless, potentially dangerous because if you grab it when someone’s falling i think there’s a chance you may actually causing injury and bruising. Of course that is using it incorrectly, but what does one do when they panic?
when my Mrs. lost her ability to stand and started to fall I just gently helped her go down and so she would not get hurt. Then I can figure out what to do. Once when she was moving from the shower to inside the bathroom that happened and God helped with all the strength I had to prevent injury. that was the last time she got a shower, it was bed baths after that.
Sounds like you got a good amount of help, not all people do. I do agree with someone else. She probably needs 24 hour supervision to prevent falls.
Get spiritual, emotional counseling for yourself to assist you throughout this unrelenting and loving but exhausting journey and the grief it brings. Do not best yourself up. Practice self care with appropriate exercise, nutrition, rest etc. And remember , regrets are usually the right category to put short responses etc in, not the heavier word, guilt.
My advice is that would go more for spiritual consoling/practice as this is - in my views - the best way to survive these tough moments!
My prayers..
If I wake her up from a nap and she attempts to walk before she is fully cognizant, her legs really truly do not remember to walk. They might take 2 steps, then dead weight/crumple. I've waited 5 minutes after waking her up...and it might be 4 steps then dead weight/crumple. If she wakes up on her own, it still takes a full 5 minutes before her brain is able to fully function, even though she insists she is okay. However, she is more able to stand up and "walk".
We do exercises nearly every day. If I don't exercise her to do some "continuous walks," she is unable to get out of the chair to a standing position and stay upright and take that first or second step. However, after a few attempts, she is able to do this. Its almost as if we have to invoke "muscle memory" to get her to stand up and be balanced.
My mother is incontinent and has almost no ab muscles. However, the little bit of walking and standing that we do, is enough for her body to remember how to get in/out of a wheelchair and how to walk.
If everything else is okay with your Mom, then her ability to not walk does not mean the end is near. I've seen people in my Mom's MC floor, easily live a full year after being completely bedridden.
One other thing: I've noticed that my Mom's dementia symptoms come and go all the time. Every day is a new day....
If on the other hand, you wish to develop more patience, there are ways to go about that.
It also sounds like your mom needs more help now. Maybe it is time to hire someone for the afternoon and evenings.
Some of your frustration comes from your inner sadness that your mother is declining. It is much harder to accept in our own parents or spouses decline than it might be if this was a stranger. You would likely tolerate more dependence if she were not your own mother.
If it helps, you can keep in mind how you would interact with someone needing this level of care if she were someone unrelated you were assigned to and it is your task to help her be as safe and comfortable as possible.
Hang in there. Keep giving it your best even though it hurts your heart to see your mother becoming more frail.