Between washing her and changing her and taking care of her house, we are balancing our lives between what the caregivers can do in a certain period of time and what we have to do. What's worse is that my mom is always saying how she doesn't want to live like this. She's depressed, but yet has failed on almost every antidepressant. She takes Xanax for anxiety. How do you all cope?? Thank you!
You are succeeding. But this comes with a large caregiving burden when someone is not independant.
Is Home still the main goal?
Ask yourself some more questions:
Why? Is Mom happier at home? Is it easier? Does it provide her better care? If so, you may wish to carry on but lighten your load as best you can. With some sort of Care Manager to arrange the staff & services.
Ask yourself & Mom, could she be ok (happy, or the same) elsewhere? Could this meet her needs & also reduce your burden load? Is that an option you want to consider?
The goal to 'Stay Home as long as possible' is a good one. Home is where we feel attached, feel most comfortable, expect to be pain free, feel loved. The 'as long as possible' part varies per family.
Timeframe is important too. Keeping someone home if terminal for a week, to pass at home, all hands on deck for an intense week is very very different to supporting someone to live at home, ongoing, for years when all ADLs require daily assistance.
What sort of timeframe do you anticipate? Would this factor change the overall care plan?
I am glad that the priest you know found a person who he feels comfortable with.
I realize that parents have a hard time listening to their children but they usually listen to their son more than their daughter. Older generations tend to be a bit sexists.
I have found that people who are now in their late 70's+ are very opposed to antidepressants b/c of the stigma of being deemed 'crazy'.
I've been on and off AD's for 25 years. And benzos, which I am tapering down, VERY slowly for my chronic anxiety. Literally took a year to cut down my dose from 4 per day to 3. IDK if my psych doc will expect me to cut down further.
My MIL will NOT take AD's, b/c she says "I am not crazy! Stop saying I'm crazy'. Well, NOBODY said she was crazy (but she is). She has Xanax and also Ativan for the horrible anxiety. She waits too long to take a dose when she's having a bad day and so they are not as effective as if she anticipates it's going to be a rough day. (ie: a dr's appt, her CG's are coming in, someone (anyone) is going to come inside her house)...DH has recently stepped up to help care for her and he will simply give her one and make her take it or within a half hour she's literally screaming at him--and that's not good for anyone.
It's easier and much less stress on everyone involved if you stick to a regimen--you don't have to take a full dose--just enough to keep an even keel. Yes, it requires thinking ahead and such--but like my MIL, who is 92...her anxiety is not suddenly going to be "OK". If she's keep a level blood level of benzos on board, she wouldn't have these horrible panic attacks all the time.
She will, however, drink a small glass of wine at night. Somehow that is OK with her. The dr told her it was for 'her blood' which makes me chuckle b/c that's what my GREAT grandfather was doing 100 years ago.
My friend can’t let her mom read the list of side effects on her meds because she would freak out and not take it.
For some reason, some moms will listen to their sons more than they will their daughters. Old fashioned sexists thinking. The man holds all of the authority. So, I am not surprised that your MIL listens to your DH and takes her meds.
One of the very first points that was introduced during the first meetings was that in processing grief and bereavement, there are NO “normals or abnormals”, so not to waste time searching for them.
May not work for everyone, but it was a GREAT concept for me.
They said just what you just posted. Everyone processes grief differently. For some it lasts a lifetime and others move on with their lives.
" caregiver exhaustion". It sounds like you may be experiencing some of its symptoms. Seek support and input from your PCP for your own self care; learn more about
" caregiver exhaustion" ; seek emotional, spiritual support for yourself via faith based of choice, and/ or licensed SW, or community chaplain. Have your mother's PCP assess her for " level of care needs" and, begin to explore possible options for placement of your mother into an appropriate level of care facility. "ALF" , "Skilled Care",
" Memory Care", or perhaps
" independent living" senior retirement community. Her PCP should be able to refer you to a
" case manager" to look at options.
Your , the family well being is equally important as her well being. Finding a balance to it all can be challenging to put it mildly.
Seek help starting with your each PCP, and consider options.
Practice self care with simple things like exercise ( simply walk etc), get outdoor time, stay hydrated, eat nutritiously, get some social time and or alone time ( movie etc etc), practice prayer or your preferred meditation and, journal, listen to preferred music, honor other personal interests for YOURSELF ( SELVES).
If you become ill or die, she is left without an advocate.
Fellow poster Beatty always says that caregiving only works if it works for BOTH parties.
You need to sit down and look at mom's finances and see how far her money will last if she stays at home with enough help that YOU don't end up exhausted.
If Medicaid is going to be a factor in the future, then it may be a better use of her funds to private pay a facility for some period of time before she needs financial assistance.
Are you able to lighten your load, take breaks?
I am concerned that she is on Xanax regularly. It may not be helping her depression but making it worse.
"chronic use of benzodiazepines is associated with depression, cognitive impairment and an increased incidence of developing dementia. The elderly are especially sensitive to benzodiazepines.
" https://www.pchtreatment.com/what-are-the-risks-of-taking-benzos-for-anxiety/#:~:text=These%20medications%20also%20cause%20disinhibition,increased%20incidence%20of%20developing%20dementia.
Are you an only child? Are you her POA/HCPOA?
Your life also gets in the way. I hate my job, even though it's a good job and I mostly like it. I just have a a@@hat for a boss and his boss is worse. My father freaks out if I even talk about changing my job while staying in the area. If I could travel I could get a new job almost instantly but I can't with him, or I don't see that I can.
Wish I could get my father on a med. He took Prozac for a month and it transformed him. Of course, he didn't stay on it so every so often the anxiety rears its ugly head, and he goes off the reservation.
Anyways, it's a long hard road is many cases, even with the easy ones.
I posted about death with dignity because I watched both parents die. They were in their 90s and didn't want to live any more. They cried out about wanting to die. They begged to die. But nothing could be done to help them.
I coped the way you are coping now. But I will always be an advocate for peaceful death for those like my parents and your mom. Perhaps after your experience you will be too.
thank you
I think it's safe to say nobody "wants" to live with disease or dependent upon loved ones to wash their bodies, let's face it. But life on life's terms often doles out such things anyway. We either keep trying to get help or we give up. If she chooses to give up, get her on hospice and meds to keep her relaxed. Or into a SNF w hospice if qualified. Decide how long you choose to provide the in home care yourself, and how much is "too much" in terms of sacrifice.
Wishing you the best of luck with a difficult situation
It’s difficult navigating this time with our parents. Be kind to yourself and try to navigate with acceptance and grace.
And it IS hard for you. Don't deny yourself the truth of that. I could never do 24/7 care in the home. It is terribly hard.
Not everything can be fixed. The torment of aging and loss is so very difficult. It can only be endured. Sharing her truth with you helps her. Your acknowledging that this is hard helps her.
I am so very sorry for the suffering of you both. Allow the grief. And in it I hope there are moments you can remember the love and the joy.