My wife and I have been caregivers for our loved one for 3 years. Very intense 24-hours a day, no vacations, no breaks. LO was recently placed in memory care. We both feel lost, is this normal? We are so far behind on upkeep around the house, we don’t know where to start. We also have catch up on our own doctor’s visits that we put off for three years. We are so TIRED we feel sick. Is this normal? Before we knew what we had to do every day. This is all in addition to experiencing the normal guilt feelings.
It’s like when soldiers try to return to normal civilian life .
Don’t let guilt stop you from living your own life. Easier said than done for sure. You did not cause your loved ones illnesses or their current need for facility care. You’ve been doing so much for others. Time to care for yourselves.
Take one day at a time around the house for now .( I’m still catching up on minor repairs and maintenance ).
but do try to make those doc appts .
Try to also remember the things you used to like to do , any hobbies etc . Catch up with friends .Go out on a date !!!
If possible , perhaps go on a long restful weekend somewhere , a lake , the beach , a resort .
It will get better .
Yes, this is normal. When you are so invested in 24/7 care you become very enmeshed with the life of the one in care.
It will take time to adjust for ALL of you.
Time to take a deep breath and schedule doctor appointments for both you and your wife. Without your health you have nothing, so that needs to be your number one priority. Maybe even take a mini vacation. Once you are at a point where you can think straight, make a list of things that need done and prioritize them. It will take time, but you will eventually start to feel like yourselves again.
Take care.
Planning for Care at a Nursing Home
There may come a time when the patient’s care needs surpass what can realistically be provided at home. Care needs grow more complex over time. Recurring infections, lack of balance, swallowing problems and the associated dangers of choking and aspiration pneumonia demand increasingly specialized skills from the caregiver. Eventually, the patient will need round-the-clock care, seven days a week. If the care needed is beyond the ability of the family, placement at a nursing home may be the best and only option.
· When planning your care strategy, consider that the road ahead will be very long, possibly spanning many years. Is the family able to provide all the care that will be needed indefinitely?
· Remember that the care process grows more complex over time. Do you have the skill set necessary to provide adequate care at home, all the way to the end?
· Is the family emotionally and physically able to handle the caregiving challenges into the future, or are family members already exhausted from the demands of caregiving?
· Are caregivers able to meet their other family responsibilities, such as caring for young children?
· Is the health of the patient, or that of their caregiver, at risk?
· Is the social environment of a nursing home more suitable for the patient than their home environment?
· Consider the layout of your home and the special equipment that you’ll need, such as a hospital bed, hoist, wheelchair, and so on. Is it practical to care for the patient at home?
Moving a loved one to a nursing home is usually a difficult decision and quite painful for the family. Often, family members oppose this option because they cannot bear the thought that they are somehow abandoning their loved one. Such feelings of guilt and shame are common, and can be very strong. They are, however, not a justification against nursing home placement.
The primary concern should always be the comfort and safety of the patient and whether their care needs can be met at home. Equally important is keeping the patient happy, safeguarding their rights as an individual, and treating them with the dignity and respect they deserve. These kinds of issues must be considered with an open mind, and the golden rule should be meeting the needs of, and providing the best possible care for, the patient.
Long Term Care facilities DO NOT provide "round the clock CARE, seven days a week." Yes, they are staffed in some fashion all the time, but the staff is caring for many residents, and for many, if not most, staff "it is a job" - so the care they provide will be of the "checklist" sort.
Most long-term-care facilities, particularly nursing homes and memory support facilities are little more than warehouses for the elderly and other people with significant impairments.
In addition, the resident and family will no longer have control over the care.
While I understand the burden of caring for someone at home, when possible (financially and logistically) bringing in extra hands to provide some relief should be considered - rather than farming your loved one out to an institution.
p.s. My mother was effectively financially trapped in a "high end" nursing home for years. I cared and advocated for my mother on a daily basis for over 5 of those years (her last years). Despite assertions that it was one of the best, if not the best, in the area, it's modus operandi was nothing more than "institutionalized neglect" and the more care a resident needed, the less they got proportional to their needs,
I had mom in my home for 14 years! I lost my own identity as a caregiver, because I spent so much of my time caring for my mother.
I went through the same routine day after day for so long.
I dearly loved my mom, but I felt relief and joy, when my caregiving days came to an end.
I was able to find myself again. I certainly didn’t feel as if something was amiss.
I will never place my children in the position that I found myself in. I want them to live their own lives.
My mother regretted that I spent so much time caring for her.
Even though my mother needed help, she hated being dependent upon me. She was completely aware that it was difficult for me to be her primary caregiver.
I don’t place any blame on my mother. There were extenuating circumstances as to why she moved in with us.
I wish that I hadn’t pushed myself for so long to be her caregiver.
I sincerely wanted to help my mother. We walk into these situations having no idea how difficult they will become as they progress. I was terribly naive.
Honestly, it wasn’t the best choice for either of us. A relationship changes when family members live together.
RK,
I think as time marches on, you will feel more comfortable. Wishing you peace.
When my husband went to AL first day I felt lost somewhat.
But I started doing things for myself and soon I felt OK.
Often times we need to restart our lives as we care about quality of lives of LOs and we forget about our own.
Maybe don’t start big projects on your house, just little improvements or just making comfortable and cozy for yourself.
Maybe nice dinner, meeting friends, even a short trip or longer?
I started with deep cleaning, and then with closets, as lots of clothing was just hanging around so donating, throwing out, keeping.
My parents had a taste of “rehab” which isn’t as bad as long term care. A four star, highly respected facility and it was exactly as elisny described in her post. Very sad but also very true.
I don’t know of a good solution. My parents are now in a “residential care home”. Two other residents live in the house. The ratio is 1-4 vs 1-12. Better, but never as good as us caring for them.
Unfortunately that is just how it is in our culture.
Keeping an elder at home no matter what can harm them more than the worst nursing home could. Family thinks they can be a nurse, physical therapist, pharmacist, counselor, attendant, security guard, and housekeeper all at once, all hours, for years. If a parent has to be placed, it's because they have illnesses that are above what family can take care of alone. Insisting on handling it all at home does nothing but exhaust caregivers and not giving their elder the level of care they truly need.
When caring for someone it is good to get some additional help so you can have some respite when needed. We have a program here called IRIS which helps you pay for respite or in home care. That includes family as care givers (at least in our state). So if you are struggling they will help provide the income needed for not only caregivers, but also for things they may need in the home.
I'm an only child so have POA for Mom, Dad, and Husband. Plus work full time from home. Also need to follow through with my health care appointments scheduled for later this month.
So, bottom line, self care is vital, physical and emotional. Take micro breaks when you féel overwhelmed, and reach out to friends for a lunch date, or.just coffee. It's a gradual process of healing and rest to get your strength...and life back.
You are losing a LO (who?) and this is very difficult.
You are grieving a loss.
It is a loss.
Yes. I certainly felt this exhaustion for a couple of years (my close friend who had NO one else to take on every aspect of his life needs, including legally responsible for him) ... and yes, even me ... who is aware of and can 'easily' set boundaries and very aware of my personal self-care needs experience the "I shoulds" ... (guilt). It is a hard one.
How I handled it?
I found volunteers to visit - in-between my visits (to the nursing home). Two others for two years were beyond incredible.
The key is to learn to accept
"I am doing the best I can in this situation" and love yourself...
give yourself respites / lunch out with friends ... anything to renew.
My friend died 2/23/23. I still tell myself "I did the best I could" and he knew it. He thanked me just about every visit.
I will never forget when he said "I am burning you out."
I said: "Oh now Jer... I am happy to see you ... be with you today" while exhausted.
We do what we can and try to find as much balance (renew our energy / mental, physical and emotional) as we can.
And, as needed FORGIVE ourself.
Gena / Touch Matters
Give yourself grace to rest and relax first. You must recuperate. It's time to take care of you.
Please try not to allow the guilt. You don't deserve it and your LO is being cared for.