It started eighteen years ago when hurricane Katrina destroyed my hometown of New Orleans. Not only did I lose my home but so did my mother-in-law. So when we got settled in another town, she came to live with us. She stayed a few months and then moved to her daughter’s town in another state.
Following her was my brother-in-law who passed away while with us. He was divorced and his adult kids weren’t up for the job of caring for him, so we stepped in.
At the same time my dad developed several types of cancer, so we took over bringing him to his appointments eventually moving my parents near us. Then dad’s cancer worsened and he passed.
While this was going on we would take numerous 500 mile trips to see mother-in-law and my husband handled all the finances.
Also, while this was going on my mom got sick. So then we took over caregiver role for her. Needless to say, our lives have been about other people for quite some time.
Now I’m exhausted and wondering how much longer I can do this. My mom is terrified of care homes and doesn’t trust in home paid caregivers. Her aunt had a terrible experience at a nursing home (abuse, neglect, etc) and another relative was robbed by the in home care. So it’s just us.
How do you find time for yourself with all this? I didn’t make it to the dentist all last year because appointments need to be made a month in advance and I had to cancel five times when mom needed to be hospitalized or have surgery. Luckily I’m healthy so far but if something happened to my husband or I we’d be in trouble.
I learned from my mom, loooonnnngggg ago that it was important to stand up for your own life, family and marriage. And that "available" (she was a stay at home mom with 3 young kids) did not equal "obligation" to provide hands on care.
Your mother's fears may or not be founded in reality. In-home caregivers need to be vetted and bonded, and valuables removed.
You might benefit from having a "needs assessment " done by a SW/RN at her doctor's office or the local Area Agency on Aging. Then do some visits of LOTS of facilities that are affordable for her. Visit several times. In doing this, we were able to quickly eliminate places that were unsuitable in any way.
Good luck. Your mom is lucky to have you as her advocate.
Respite care is incredibly important. Hope you have something lined up for that. Without a meaningful break-a serious illness could take you out, and then what? As Barb mentioned, talk to you local Area Agency on Aging for suggestions.
Will your mother go to Adult Day care? Usually held in Senior Centers and can offer you a few hours of respite.
It's not being selfish to take care of yourself. Last I checked, all health care workers have days off.
The fact that your mother doesn't want home care or go into a NH is, quite frankly, her problem, not yours.
So sorry that you are in the "eternal care giver" role but it frequently happens to those who are kind and giving. As BarbBrooklyn has stated, your Mom's fears may be grounded in past experiences of relatives but that doesn't mean that all homes are bad or all caregivers are thieves. I agree you need to get Mom accessed, medically and socially, to find out what are her current strengths and limitations. Even more important, you and your husband need to step up and take care of yourselves. What happens to Mom if something happens to either of you?? If you are retired, you are not 20, and "stuff" creeps up on you as you age. Most of it is easily fixed but you need to have a medical team monitoring you and they can't do that if you don't get to your appointments.
As a former director of admissions at a local county LTC and a certified assisted living administrator, I have to tell you there are a lot of really decent facilities out there but it takes time and research to find them. That means you need to start now (right after you make your dental appointment). Read reviews, figure out which ones are within travel distance so you can visit often (you will need to be an advocate for your Mom and make friends with the care-giving staff!). Get on nextdoor.com and ask folks for their reviews of nearby homes (the ones on the facility website might be "selected" to make them look good) and then visit the ones you like. Use your nose, your eyes and your ears. A room might smell of urine as you pass it because a resident just had an accident; time how long you are away from that room and check the smell when you pass it again; that will give you an idea for how long it takes for a CNA to respond. Also be aware that all facilities are in a staff crunch which worsened during and after COVID. Check with your state board of health and see if they have established facility staffing requirements then check with the state reviews and with the facility themselves to see how often they missed the requirement.
Payment: Medicare will not pay for custodial care in any facility. Depending on your state, Medicaid (assuming she meets the requirements) may pay for some part of a stay but this is rare. Usually an AL will demand private pay for 1-2 years before accepting Medicaid.... and you need to get that statement in writing! Medicaid funds about 70% of the custodial stays in LTC facilities throughout the country but again, a person must meet the requirements (medical and financial) and apply for the program. Most states take a 5 year look over the shoulder to make sure nothing has been "gifted" to family to qualify for Medicaid. You will need to present several years worth of receipts, mortgage payments, utility bills, birth certificate, divorce or death certificates, etc for documentation. Initially this presented a real problem for people who were victims of Katrina because even the state held documents had been destroyed by the hurricane but hopefully that is over now.
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If you don't have them, please get a Durable Power of Attorney, An Advanced Directive and a Will for your Mom (get yours and hubby's done also). Again check with your Office on Aging to get free or low cost legal consultation.
I recommend a minimum of two visits to any facilities that you like, at least one of which should be a mealtime. Assisted livings generally have a more pleasant decor, better food (they have to cook for some people who still have a good sense of taste and smell). Long term care facilities, which provide the highest level of medical care outside of a hospital), have to do all sorts of food prep (mechanical chop, puree, mechanical soft, regular, gluten free, no salt, renal...... you get the picture) and in general everyone says it is bland and awful. If a resident has no dietary restrictions, family and friends can bring them the food they like but be prepared to sign documentation to confirm that. Listen to what the marketing/tour guide tells you but ready like an Eagle any contract you have to sign. Check with your office on Aging to see if you can get a free 15 consultation with an attorney to have them review a contract. Also remember to check out the activities schedules of the facilities. If you can meet with the activities director (although they are usually busy) that is even better. do they have activities Mom would be interested in? Try and see an activity as they are doing it. Lots of people involved? Aides making sure folks get asked and taken to activities (you can't force them to go)? You should be able to get a list of a month's activities and the menu at any facility you visit.
I cared for my mother and found it gave me great memories and peace now that she has passed. Barb is right.... Mom is luck to have you but you must take care of yourself and your marriage in order to continue to care for her.
I wish you peace and luck in this journey.
I guess people either expect children to throw themselves onto their funeral pyres in sacrifice or they do not. Human beings are by nature very selfish.
As to the children, it is up to them whether to take on this burden or not. I spent my life as an RN. While I loved it, I also knew my own limitations and knew I could never do such a thing 24/7 for a family member. That was my limitation. I embraced it. And I can only suggest to others that they embrace their own limitations. The job description for Sainthood is truly an ugly one.
You have done this. There is a deep understanding within you. Now you tell us that mother doesn't like the idea of going into care. Might I ask, who DOES??? I don't like it either. But as my brother said of his days in ALF, "It's like when I was young and in the army. I don't like it, but I make the best of it".
Up to you. It is your choice. But for me, I recognize people have free will and a right to their own choice. At the same time I hold them responsible for their own choices. I don't pat them on their backs and tell them how wonderful they are as they make ready to leap on the burning sticks. I wish you so much luck in making now this choice for what time you and hubby have left together. I mean that. I wish you the VERY BEST.
There are many very nice AL facilities, I have two in one now. Her self-imposed terror is not a good reason to keep her with you.
You have overdone this caregiving thing, itis time to take your life back you and your husband owe that to each other.
Sending support your way.
Do not take on supporting others before you are financially able to make sure you can provide for yourselves.
There are resources for those that can't. (granted they may not be top of the line but you can not put yourself in a position to "hope" someone cares for you if you are in the same position 5 years, 10 years down the line)
In order to care for yourself and your family you HAVE to establish boundaries and stick to them.
Also "nursing homes" now more appropriately called Skilled Nursing facilities are NOT the same as a nursing home that someone might have seen 10, 15, 20 years ago.
There are levels of care from
Skilled Nursing, this is for people that have need for actual Medical Care.
Memory Care, for people diagnosed with dementia or cognitive issues, and or might be a flight risk.
Assisted Living, for those that need some or a lot of help with ADL's. Generally not a locked unit and residents can come and go.
Independent Living. For those that need no help but want the security of having a community. Often IL is part of a facility that has a continuum of care.
Stop cancelling your appointments. If mom is hospitalized keep your appointment, she is safe in the hospital the doctors and nurses can "spare you" for a few hours.
If mom has any income, use that to hire caregivers. Also a caregiver agreement between you and mom will make it possible that you can be paid to be her caregiver.
If mom or dad is a Veteran check to see if mom is eligible for any benefits from the VA. Contact you local Veterans Assistance Commission or the VA . Neither will charge you for their services.
The care homes of 2 decades ago, are significantly different from the care homes of today. I would only look at licensed care homes. There is independent living, assisted living and memory care (for those who tend to wander). I would take a look at some of them. Some pay by the month, some you invest in and pay a smaller monthly fee, some you actually buy like a real estate transaction and they promise all types of care until one passes, including rehab care. Some are large facilities where there are many people in their own private or semi private room. There are some that are a cluster of smaller houses, like 8 per house, and use a central kitchen to bring food to the house. And then there are the single houses.
In my state, all the licensed care homes are visited by the Health Department on a yearly basis. You can also go to senior fairs in your area to see who is advertising. Most have waiting lists. Medicare.com also lists care homes and gives them star ratings. I would go visit, just to see what is available and what the cost is. Once you find one that you like, take the naysayers and have them visit also, before they need the care.
I'm not suggesting that they move into the care home once they need the care. However, it is useful to look at the options as some of these places have a very active senior community.
You might find out that someone might need Plan B (Plan A is you). It is good if you look at what is available so that it is that much less research that you will have to do if someone does require care immediately.
You have a big heart. Please take care of it.
(((HUGS)))
I suppose you have to decide if that is ok or not.
Is there room for your life too?
You are an angel here on earth for helping so many people, and you will be blessed for your good deeds.
Go to Medicare.gov to get information on getting help to come to your mother’s home to provide ADL for her. The service that Medicare provides is on an intermittent or part-time basis, and your mother must be home-bound.
Make sure that all of your mother’s important papers and money must be locked away and secured in a safe place where the caregivers cannot have access to them.
You deserve a break, and the part-time help will be a great help to you.
Tough love is called for here, imo. You can't do it all, so mother has a choice. Either she pays for in home caregivers or she goes into Assisted Living, which is like hotel life with care thrown in. Its not a given that we need to make our parents happy, at our OWN expense, bc they want this, that, and the other thing. A good mother would be taking her daughter's needs into consideration and not just dwelling on her own wants.
At least we (I!) have learned the lesson to NOT do this to our children.
In the meantime, consider something: Would anyone (besides husband) in your family care for YOU when the time came? Because it’s common for one person to do it all, but when that person is in poor shape, no one will step up. You’re definitely a good person, and it’s sad so many expected you to do it all while they did nothing.
You “found yourself” in these situations because others shrugged and said “ah, Nikki won’t say no.”
I recommend you tell your mother that she hires in home caregivers (if she can afford that) or goes to assisted living . Suggest touring some assisted living communities . The house can be sold to pay for assisted living .
Good luck .
OP - your mom has to start paying her own way and taking care of her own stuff. Hubby needs to stop doing her home repairs. That's a lot!
And mom is going to have to make some tough choices. It was really uncomfortable for me to push my mom to accept care but I really did not give her any choice. I told her we needed a cleaning lady and she was paying (she couldn't clean her room/bedroom or change her bed - and I was NOT taking it on!). I told her when caregivers were coming - I did not ask because she would 1) argue 2) the help was for ME so I could do what I wanted with a clear conscience.
I explained about going to pages 2 or 3 and explained how questions move up or down in the threads according to most recent postings on the threads. She has not, however, been back to respond to any of our answers at all, so I think perhaps she still believes she has disappeared.
I am bumping this question up by writing this in hopes that she may find her question, and be able to respond to us.
Mom needs to realize that you can't do it all. Your sorry but taking care of everyone else has drained u. You have no life. If she can afford it, tour some ALs.