Her needs are minimal despite her age, 30% memory loss due to vascular dementia, using walker and pleasant. But due to macular degeneration, eye sight very poor. Cannot really understand or see television anymore.
Sisters think she needs "socialization" at her age and "exercise groups", not sure if it is their distorted rationalization for a nursing home. I cannot get them to understand that my living with Mom and providing 1 to 1 care from a family member (with respite care weekly via paid caregivers), is better than the nursing home route. Nursing home, I mean "memory care" (lets call it that so we can feel better about ourselves!) is convenient (stop by and visit 5 minutes a week), but after all our mom has done for us, i feel it an honor to care for her! What is wrong with them?! I feel God is watching and we will be held accountable for our actions at this difficult time.
Any thoughts or advice is welcome. thank you.
Anyone who thinks my life was easy during those days hasn’t lived as I lived.
I call Memory Care “MEMORY CARE” because where I live it’s MEMORY CARE by the way. It doesn’t make me feel better or feel worse or feel pretty. A Skilled Nursing Facility is just that, and the level of care here in SNF is a step above Memory Care.
God was evidently watching us and blessed us amply for the choices we made in deciding on her care, because the 5 1/2 years in that Nursing Home were the HAPPIEST YEARS in the last 22 years of her life, and we enjoyed them with her. She was immersed in an environment of love and excellent care, and I feel confident that my accountability with My Higher Power is in very decent shape.
It was my honor to care for her in the best way I knew how. It cost me almost a million dollars, earned by my dad and saved by her. WORTH EVERY PENNY. She died in 2007, and I still have friends who cared for in that wonderful place. One of her cherished aides bought the home where she’d lived for tp years with my dad.
Whether your mother needs “socialization”, appropriate exercise, entertainment, and safe, respectful care or not, MY MOTHER DID, and she thrived until her death at 95.
No “distorted rationalization” here. I was there day and night, every day, every week, every month, every year.
If that means that I “side” with your sisters, I guess I do.
If you no longer want or need to work then that is your choice but if that would prove to be a hardship I think you need to understand that all NHomes are not bad. My mother is in one. I wish she could be back in AL but she now is no longer able to walk. In our situation I really don't think my mother would want us to have to do all that her care requires
You also have your future to look out for, retirement, etc. Also, burnout is common and the entire thing puts a toll on your health.
You are very lucky that your family believes in placement many do not. You could read horror stories here about the opposite.
You can look for a facility which allows you to take her home for a few days if that is your wish.
I am not religious but I believe that sometimes we are harder on ourselves than what God would be.
Most of us here have tried caring for parents at home (not me; I knew from the get go that I had neither the space, the skill nor the time to give her the care she needed).
What has happened to most is a long sad tale of fractured relationships with siblings AND parent, accusations by the demented elder and tremendous difficulty in getting good medical care for a frail, increasingly immobile person who is hard to trsnsport.
Part of the issue is that our parents--especially our demented parents--don't see us as the professionals we are. They see us as kids.
If you think for a minute that your mom is going to listen to what you tell her she must do healthwise because you're a nurse, I think you have a surprise in store.
I think your sisters are sincere in thinking that your mother will suffer less isolation and have more variety in her life in a GOOD memory care facility than she would being cared for at home by one loving daughter.
And by the way, stopping by for 5 minutes is the BEST way to keep staff on their toes. By brother did that all the time. It's not a reason for complaint.
I assume that if you do this, you'll have a lawyer draw up a contract and be paid a wage out of which taxes and SS will be deducted.
Are your sisters Nurses? Non-nurses will have a different lense to look through, different values & different ideas. I've often seen the one with the Nurse Soul feels compelled to offer the care themselves. It's their calling afterall.
The heart of the matter is what is best for your Mother. My Mother is a quiet home-body, staying home suits her. Her sister moved herself into an independent living with continuum of care onsite to engage with all the activities, dining room, happy hour etc.
What's your Mother like?
A friend (RN) went through this too. But her Mother has settled into her AL/NH & joined the activities - pre-Covid. I agree Covid does make it much much harder now. But my friend can still work, could travel, visit her grownup children. She would not have been able to do this if 24/7 caregiver.
What about a compromise?
Try at home with you as Plan A - for say 6-12 months. Move to Plan B (Memory Care) if doesn't work well enough.
The big rocks in the road will be;
1. Lone wolf caregiver attitude. You will need to allow other non-you carers in when the care needs exceed just you. Use your nursing teamwork skills to build & manage a team.
2. Realistic expectations. Note your sibs have already stated they do not want to be hands-on caregivers. Have no expectations they will change, or be your backup if you get ill. No pressure or guilt on them. Arrange your own respite.
3. People show their love in different ways. Some by acts of service (hello Nurses), some by bringing little gifts, some by spending quality time. All the siblings will hopefully be able to show their love in their own way.
I have discussed these points with my DH as we have already had the Sibling-Nurse attempt to roster family onto a care plan she signed up for alone.
If you take this on you need a realistic plan B for the future when her needs become physical as well as cognitive, I always said I dealing with both behavioural issues and physical needs was too much to ask of anyone, KWIM? Don't include your sisters in this plan, they have already given notice. And don't assume that at age 92 her time is near, my mom managed to hang on until age 99.
(BTW, after over 5 years of full time caregiving I eventually hit the wall big time and my mom spent the last 18 months of her life in a nursing home)
Hugs Cwillie! You knew when you had hit the wall.
I think things can go horribly wrong when you know you've hit the wall and try to continue without asking for or getting help due to pride or trying to keep from judgment or whatever reason.
You didn't let that happen and made the change that was needed.
Have you spent 24 hours with her in her current setting to see what her actual needs are?
If you take her out of MC, will the placement still be available if/when you decide it's not the job you signed up for, or if you develop a health issue, or if you spouse or child becomes ill?
I truly hate it when a person comes waltzing in here using God-words to try to act all pious by raising themselves above others or to try to guilt us into believing our caretaking decisions are 'wrong'. As if we're not already stressed out enough with a ton of responsibilities and decisions on our plates as it is? As if God will smite us down and we'll burn in hell for placing our parent(s) in managed care where they're safe & attended to by teams of caregivers. What a rotten thing to even SUGGEST to a support forum for caregivers!!!
FWIW, I know that God is indeed watching down on me these past 10 years I've been in charge of my parent's lives and He is so proud of all of my efforts and all the hard work, time and emotion I've put in on behalf of my mother living in Assisted Living for the past 7 years. He is happy I've honored her in the way I have, same as so many other devoted caregivers here on this site have done, regardless of anyone else's opinion on the matter. I am honored myself to be held accountable to God for my actions on behalf of my parents.
How's THAT for a 'thought' on your post?
After he died, I moved Mom to a nursing home (the wrong type -- I didn't know the differences), and she continued to decline and slept all day out of boredom. She, too, has macular degeneration and vascular dementia.
I finally moved her to a memory care facility, and it's as though a light switch was flipped on. She suddenly had people around her who weren't sick like the first place, there were activities going on that she could participate in or at least be near if she couldn't see to do them, and she stopped sleeping all day. The edema she was suffering from at the first place and at home was mostly gone within two weeks, and almost two years later, she's still with us.
It's certainly your family's decision (actually the decision of whoever holds power of attorney), but I see you projecting a lot of your own prejudices about nursing homes that aren't true. Who says you and your sisters would visit Mom for five minutes once a week? OK, it's an honor to care for her, but will you admit it's time to place her at some point, or will your pride prevent you from admitting defeat? "Let's call it memory care so we can feel better about ourselves?" -- what's that about? Do you have any idea what memory care even does?
God is indeed watching, and He wants you to do what's best for your mother, not what you think will score points for you in Heaven.
Keep in mind that pride goeth before a fall, and perhaps be a bit more open-minded about your sister's opinions. They may be more valid than what you're giving them credit for. Having an RN doesn't give you all the power.
Love your response! Sometimes we feel stronger for holding on. The real strength is letting go. So true, all of us have suffered with pride every now and then.
If you really want to do this, you could get private duty work and hire other people to help, because you WILL need them. Get her into daycare, but keep in mind that if she gets incontinent, they will kick her out. At least if you keep a job in your field, you will have chance of getting back in the market. Without financial help from siblings, I can't imagine how you'll manage. One reason I didn't get as much help was because I knew we couldn't afford it. Right towards the end, it took almost $2000 just for minor help for my dad. His savings would only last two and half more months. You could get her on Medicaid for some home help, but will still have to pay out pocket for help.
Keep in mind also, that they can go down quickly. My mom wasn't doing too bad until her hip came out of place - and they couldn't put it back. Bedridden, and pneumonia took her three months later.
The thing I want you to focus on is that there was NO history of breast cancer in my family and there were no stressors. I was an RN in a new relationship, and very happy when cancer struck; had raised my daughter and she was ready to move on to her own life. Looking forward to happy times, when BOOM.
As an RN I am surprised that any physician would suggest that your cancer was caused by your own choices. It is further victimization of a victim and there is NO proof of any such thing. While we do know that stress is difficult, that it can stress a body, and that cortisol is not good for our immune system, as I said, there is no proof of what he said.
I wish you the best. You and your choices are not responsible for your cancer. Don't let anyone tell you that it was. There are many people living stress free lives (or as stress free as humans EVER are, who get cancer.
I wish you the best and hope 35 years from now you are right there telling others "YOU CAN DO THIS".