I am the sole caregiver to my 87 year old Mamaw with Alzheimer’s. She has been with us, my husband and me, for 5 years. We have Zero help as she is the only elder left in our family. It’s up to me to care for her. I am trying and I thought I was doing great but her mental decline has changed her a lot to the point of her being mean, hateful and hurtful. The complete opposite of who she is. This has made my mental health decline at a rapid speed. With my husband’s recent health scare, I just don’t know what to do any more. I need help. I need to be able to go to the store or the bank. Maybe visit a friend or whatever people do. I’d like a weekend alone with my husband where I wouldn’t have to worry about my Mamaw the whole time. I don’t know I’m at my lowest and I know I need help. Thank you.
They also have volunteers that come out to the home to sit with your loved one, while you get out. Contact your local Area Agency on Aging to look into that.
And of course it may just be time to have her placed in the appropriate facility where she will receive the 24/7 care she needs and you and your husband can get your life back.
It's not worth risking your or your husbands life over. Because statistics show that 40% of caregivers of dementia patients will die before the one they're caring for. If that isn't enough to scare the crap out of you, I don't know what will.
Then too, she has not become “mean, hateful, and hurtful”. She has become the victim of a harrowing illness that is progressively destroying her capacity to remember those she loved, and to manage hostile and angry feelings with any rational tools to address them logically.
You need help, and SHE needs help, but neither of you will get what you need unless you will consider releasing yourself from the stranglehold of a bad promise that was lovingly but innocently made.
PLEASE- do research on what financial aid is available to her, whether she may be able to benefit from Medicaid funding, residential settings in your area that might work for her and you, and other resources for geriatric patients with dementia.
I didn’t know what to do, just as you don’t, and by assuming totally wrongly that I had to do 100% of my mother’s care BY MYSELF, I achieved 60 extra pounds, a sleep disorder that persists 20 years later TO THIS DAY, and the sorrow of WASTING nearly 5 good years of my mother’s wonderful life in the care of a residential center near my home.
Please learn from my mistakes. YOU need to make a promise to YOURSELF. Please let that promise balance life for you and your husband. It’s ”up to you” to research, plan and provide the best care for your Mamaw, but not at the expense of yourself. You’re important too.
You can also send grandma to a Memory Care AL for a week or two for respite care when you need a break. Call around to a few ALs in your area and see what their terms are for respite care.
Wishing you the best of luck getting the help you need now. You deserve a life too, b/c grandma is not the only one who's important here. There are several lives that matter, not just hers. Caregivers tend to lose sight of that fact, and get overcome with 'guilt' when they have to admit they can't do it all alone anymore. Don't be one of them.
You cannot do it alone, respite, day care, caregivers or placement should be considered.
You need to get rid of guilt, realize every caregiver feels that, there is something I posted from my notes on guilt:
As a caregiver, it might seem like there is everything you feel guilty about.
You might feel guilty over:
Feeling resentful, trapped, unloving, or other negative thoughts
Feeling that you’re not as good of a caregiver as you should be or that others are doing a better job
Not visiting enough
Wishing it was over
Wanting time for yourself, asking for help, hiring an in-home caregiver, or using respite care so you can have a much-needed break
Why guilt is destructive for caregiver health
Common misconceptions about how caregivers should feel or what they should do and the guilt that comes from not living up to those unreasonable standards can really hurt you.
These beliefs can push you to take on unrealistic responsibilities, avoid getting the help you need and deserve, and be too hard on yourself.
All these things add to your stress, worsen health, and can lead to poor lifestyle choices.
Finding ways of dealing with caregiver guilt in positive ways helps you make choices that improve your
1. Acknowledge that you feel guilty
The first step in solving a problem is to admit that it exists. When you suppress a feeling, it only becomes more intense.
Identify when you’re feeling guilty and acknowledge the thoughts and emotions. That can help reduce the feeling and let it pass.
For example, say “I feel guilty because I snapped at mom this morning over something trivial because I’m exhausted.” or “I feel guilty because I didn’t visit dad today because I need some time to recharge.”
2. Check your expectations against reality
Having unrealistic expectations causes unnecessary guilt.
When you think “I should be able to take care of everything without feeling resentful or exhausted,” check that against reality.
Would you really expect that all other caregivers should be able to do that and keep it up forever? No, of course not. It’s unrealistic and not something you should expect of yourself.
Or, if you think “I should never move my older adult to assisted living or nursing care, no matter what,” think about the reality of the situation.
There are so many situations where keeping someone at home is unrealistic and could cause serious harm to the older adult or the caregiver.
If a friend had told you about a situation like that, you would agree that a move is the best solution for everyone’s health and safety.
3. Don’t compare your worst moments with someone else’s
Based on what you might see or hear about other caregivers, it could seem like they’re doing a better job.
You might think they’re better at coping with stress, hands-on care, working with family, or finding resources.
The truth is that you only know about a small part of their lives.
It’s not realistic or fair to compare what little you know about their situation against your everyday caregiving reality. Most likely, they’re struggling just as much as you are – or more.
In this situation, it’s helpful to be honest with yourself about how realistic your expectations are.
Nobody can do everything by themselves and there is no such thing as a perfect caregiver.
Set yourself up for success by setting achievable goals, getting help with caregiving, and taking time to care for yourself. That’s what keeps you going in the long run.
You need to practice self-care so that you can be healthy and fit (mentally and physically).
A Geriatric Neuro Psychologist could assist you with the right dose of medication. Sometimes a little medication before going to bed can calm the person. You don't want to be like a zombie and you also don't want them to be like a statue or out of control.
Important: Has your grandmother been checked for a UTI, a simple urinalysis.
A shot of cranberry juice each day in the morning and white cotton briefs and railings around the toilet, NOT the booster seat since they/you cannot wipe as well. Lots of water and keep Pedialyte and Gatorade in the house at all times.
There are day respite programs that offer transportation to and from, breakfast, lunch, some have an RN on duty. For an added co-pay through Grandmother's health insurance physical therapy and/or speech therapy. My mother goes on a Tuesday morning so I can get the car serviced, banking, etc. without worrying. She attends for four hours and is now use to the routine. Everyone there that drives up, I drop Mom off and pick up, is in the same boat. Your loved one cannot be left unattended, they could wander or turn the stove on.
The "overnight" respites at facilities are out-of-pocket. However, with the 2023 calendar year a lot of insurance companies are offering added benefits--respite, dental, add-ons here and there that were not previously offered.
If your grandfather was a Veteran, there is $$$ (it's not a guarantee) called Aid & Attendance. You would need the discharge papers. Your grandmother would be eligible for financial help. It's a lot of paperwork. I recommend asking your Nurse Case Manager or a Social Worker to assist you with this.
Two years ago it was a nightmare with my loved one but now with the right medication things are calm and manageable. Although I did notice a change with Mom getting pensive, a panel of bloodwork can tell a lot "before" the trip to the Geriatric Neuro-Psy. I take Mom every six months for a "tune-up".
I would sign up for the portal and run everything pass your Grandmother's primary care doctor. They write the orders and do the assessment for admission to the facility (respite) you choose. Usually the nurse's in the PCP
office know a lot and are resourceful.
Half the country is in this situation. Whatever Church you belong to or if you think you should "formally" register for a nearby one of your denomination usually there are a lot of retirees that will come and help and sit.
Parishioners come every Sunday with a Bulletin, Communion a prayer and what is going on to bring the parishioner up-to-date on the happenings. They have never missed, rain or shine!
I hope I gave you some encouragement...you, your husband and your grandmother are all in my prayers!
Look for respite care near you - many residential facilities (nursing homes) have options to care for your loved one for a few days to a few weeks.
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