My mother’s condition (stroke, right side paralysis, unable to stand, incontinence) is waxing and waning. She became unable to stand last December and her caregiver expressed inability to continue caring for her due to her condition worsening. I came and have been staying with her since January and have decided she should move in with me and my husband. She does not want to move. People (caregiver, family) think they can handle my mom now that I have decided to move her in. My issue is, if she stays and they continue to struggle (because that is how they are, my family is addicted to suffering), what happens in 6 months when she declines further? I took medical leave from work to deal with this but I still have a life I need to get back to. Do I let them deal with this on their own or continue with the plan of moving her in with me? I do not appreciate the back and forth with these people because it adds too much confusion. When someone says “I can’t do this anymore” or “I can’t do…” I take that very seriously and act on it. I don’t know if because of the fact that I am physically here and handling everything, they seem to have gotten a second wind. Any advice is appreciated.
Get her into an appropriate facility ASAP. You will kill yourself with the care required to keep one aging sick person on their feet.
I'm really hoping my year long rant/post is helping somebody out there to see the writing on the wall.
Even my reluctant DH admitted his mom should have been tucked away in this facility 5 years ago--the last year being a slice of hell for many people involved.
Does she have SS, pensions savings?
Has she applied for LTC Medicaid?
https://njelc.com/medicaid-in-new-jersey-at-home-vs-in-assisted-living-vs-a-nursing-home/#:~:text=Medicaid's%20MLTSS%20covers%20residents%20in,own%20specific%20conditions%20for%20admission.
She needs more than assisted living. She has medical needs that are way above your pay grade. And it will get worse, not better.
Hundreds of people on this board thought they could do it themselves too. Now they are exhausted, broken mentally (and physically) and wish someone had warned them. Consider the following:
-Whatever schedule you have now will be out the window.
-There will be no more dinners out, no vacations. Friends and family will say to call if you need help, but almost none will volunteer to stay with her if you need time out.
-You two will be her world. You will be expected to meet every need, including companionship.
-When do you plan to get things like errands and grocery shopping done? She cannot be left alone.
-Can you lift her multiple times a day and night?
-If she worsens, how will you handle the medical needs?
-Are your toilets, bathtubs, etc handicap-ready? Will her bed have safety rails? Are meds stored safely?
-Can you handle multiple toilet visits, butt wiping, diarrhea, bed urine, and getting her undressed/dressed? Multiple times a day/night?
-Are you able to help with bathing daily?
- If she keeps you up at night, how do you plan to handle work/chores the next day? Same goes for working from home.
- If you get sick or injured, what plan do you have for her care?
- You'll very likely need aides. Are you okay with strangers in the house?
- When you are no longer able to care for her, how will you get her into a nursing home?
I've said before that people think they can "love their way" through caregiving. That love will be enough to sustain their energy and will. It isn't. Nor is it the same as caring for a baby. Caregivers here loved their elder dearly. They had to place their elder to save both of their lives.
You summed it up perfectly. Families think they can as you say "love their way" through caregiving. Do they ever get the rude awakening a little while in when they see they can't.
Good luck.
A couple of questions : who all is them? you had mentioned caregivers and family. What are the details and relationship of the family members? It sounds like there is a caregiver in place already.
Also how far away from your house is her house now?
As others have mentioned, moving her in with you could end up being the worst choice in the long run, even though financially you are seeing some pluses. While the back and forth with current family/caregiver is adding confusion and annoyance, having her move in with you may add much worse stresses.
IF staying in her house is not feasible any more, consider selling her house with placement in assisted living etc.... nearby
Your mom is at a stage where her needs have stabilized to a degree. Her situation will change at some point whether you are there or not. It won’t necessarily be because you left.
You should not take her into your home. The unique setup mom has now may or may not survive w/o you and you may or may not be able to replicate the care she is receiving now in your home. Even though you feel like you are doing it all now, your home won’t be her home.
And what about your DH? Now like it or not his home is a nursing home. How is he with changing the brief? You know life will happen to you as well and it usually doesn’t come with a 24 hour warning.
For sure moving out of her own home will be a game changer for her whether to a facility or not but if she had to move, let it be to somewhere sustainable as her condition declines.
Why not go home, return to your life and let the team she has carry on if that is THEIR Choice? When they need a break and ask for help, see what the new situation requires. You don’t mention mom not being competent to make her own decisions. Are you her POA?
Each situation, person, circumstance is different and likely to change. Pacing yourself is important. There are no guarantees for tomorrow or six months from now.
And yes, an extra layer of help always makes things go smoother. You were able to be that layer this time and that’s a good thing.
If you are the POA you will have plenty to do just making decisions. You don’t have to be the hands on caregiver as well.
Please know that whichever scenario is chosen there will be challenges. If your mom is depressed, make sure that’s being treated. She will miss her family if they don’t live nearby. You didn’t mention how far away you live.
Wishing you all the best.
1. She can't stand on her own.
2. She's incontinent.
3. She needs help with her brief/diaper
4. You transfer her to (a) chair (b) bed (c) commode
5. You have to hire someone to take care of her.
Wake up call - SHE NEEDS MUCH.
Don't do this! None of it will get better, only worse. The incontinence alone is daunting, since it requires changing her and will eventually involve fecal matter if it doesn't already. Germs, and you need to glove up. Smells. Odors that spread throughout the house no matter how you try to keep things clean. You risk injury transferring her, no matter that you can do it NOW, because all it takes is a slipped disk or two to render you useless in that regard - and then what?
Hiring caregivers sounds so easy, but it isn't. They don't show up sometimes, they aren't as capable as you thought they'd be, and you will need more than one for sure. Plus what few people think of at the outset: You'd have a steady stream of helpers in and out of your house. You need to feed them. They might feed themselves, and well do I recall the fragrant smell of fried iguana or something like that permeating the house while I tried to sleep in my room above the kitchen at 2 a.m.
If you love mom, find her a care situation in a nice facility where she'll have companionship, food prepared, and 24/7 help. Then count your blessings and enjoy peace in your home.
Listen to these people here, we have heard the same fantasy ideas before, it does not work,
Sell off everything you can, get her in a facility self pay and apply for Medicaid when her money is about gone.
What happens in six months if they don't continue the care?
Placement.
I would be sure if she comes to live in your home -- if you CHOOSE to do this that you see an elder law attorney and get all paperwork for POA in order and get a good care contract for shared living costs done.
If you choose not to do this (the wisest choice) then I think you should work now on placing your Mom. People are well meaning, but they seldom deliver and if you have been here any time at all you see good evidence of that fact.
If you aren't POA you may want to consider CAREFULLY whether you wish to be or not.
I wish you the best and hope you'll update us. You can force this issue if you like. You already know this won't work, I think?
Your moms care is now WAY beyond anyone taking her in their home and it's time to have her placed in a skilled nursing facility.
So until that is done, step back and let the chips fall where they may.
Find a care facility near to you that she can be placed in. This is what you offer.
If she wants to stay in her home and the family along with her main caregiver think they can handle her, there will be no stopping them. So step aside and let them try.
I did in-home caregiving for 25 years and am now in the business of it. So I'm going to speak from experience because I've seen every family dynamic there is. Families start out with the best of intentions when it comes to taking care of an elder or an invalid. But the road to hell is paved with good intentions. Remember that.
Make yourself plain to everyone that when the sh*t hits the fan (and it most certainly will) and everyone is "burned out" make it known to all parties that you will not step in and handle it.
Your mother belongs in managed care. She is fortunate to have you and a family that cares about her. If she is placed all of you can visit, help her, and be in her life. She will need all of you to be.
Offer to find a good facility to place her in so she can get the care she needs. Good luck.
Whatever you do, you need to have family agreement. This road is quite long, if she gets another stroke and becomes completely bedridden, the whole story gets to a higher level of complication and care requirements.
Apparently, there are too many decision makers in the family. These types of people who are sitting on the side and have wonderful ideas, have really no clue as to what it takes to provide the necessary care. But they are able to point a finger and accuse you of all that you did wrong and the mistakes you made.
In your shoes, I would not move my mom. Clearly, there should be understanding between the caretakers and those who have a vested interest (financial or otherwise) before you assume the responsibility of the main caregiver. There will be additional care costs, you may need to hire someone to help, place your mom, and so many other decisions that probably you cannot make on your own.
In your situation I would advise not to move your family member into your home for you to care for. This type of situation is riddled with caos and work that you most likely are not prepared for. It is best to hire in house caregivers from a licensed agency which can be provided via your nearest hospital social worker...they will provide you with a list of agencies in your area- or private pay care at an Assisted Living Facility or Long Term Care Facility. If funds are not available then you need to look at Medicaid in your state and their rules and regulations. With Medicaid you have to exhaust your family member's assets before he or she is accepted and then you will need to turn over their social security checks to them for management of funds. There are family members who refuse to do this and expect the government to feed them and provide them a place to sleep for free. That is not how things work. The bottom line is when the money runs out Federal Assistance is the next step and they then will make decisions about your health care. That is just the way things are.
I was the only one qualified to take care of my mother at home but this would have been impossible because she required 24 hour care. My sister suggested that my mom stay with her for a few weeks and then that I would take her for a few weeks. Absolutely not...my husband is disabled....impossible because I saw the writing on the wall....I would have ended up with the majority of the work. I saw this many times with family members in the emergency department. They even ended up with shouting matches in the ER about who was going to do what...with Hospital Security being brought in to escort family members out of the emergency department.
Also it is important to hire an attorney and have all legal paperwork signed
for Power of Attorney, Health care POA and so on so these documents are available to assist you during this tiring process. It is imperative that a Will be available for the Attorney to assist in legal matters at time of death.
Hope this response can help you in some way....
CA
Very tiring. It took some time to get it cleaned out and sold so she had money for her AL. Then a few months later she went to memory care and they let her keep her cat,Thank God! She became bedridden and then I chased the food/water and litter box every other day! Luckily I got mom into a place about a mile away. It's always something!!! I'm with everyone else here, you might think you can do it but it's going to get more stressful after time. My brother accused me of being mean to my mother but it wasn't like that, it's called burn out.(Armchair dictator, where was he? Couldn't even fill her pill dispenser!!) You can only do so much and then the irritation sets in. It creeps up on you and you end up being the caregiver and you lose your status of being a loving daughter. The family assumes you got it and she's all yours! They get to come and go and get all her love, how nice for them. You become the bad person and you aren't.
However good your intention is, you've got to come up with another plan.
Moved my dad into an AL near me, which is good in many respects for me being able to visit, sometimes on short notice
But for various reasons, psychologically we are not ready to sell his house yet. Its an hour drive away. So I am going over every week or two to check on it, etc etc. I forwarded mail to me, but some is not forwardable so I have to still deal with that. Maintain the lawn etc, . And worry about it getting broken in to, squatters etc..... It is an added time factor and worry factor....
If there is one portion of the family that is able to handle the 24/7 care for your Mom, that is great. However, you all love her so include the rest. Perhaps a rotation (if local) to give you a break or needed supplies/shopping/appointments. Maybe a day of pampering your Mom. You have to become creative for sure.
In November, 2017 I brought my mother to live with me after it became very clear that she was no longer able to live on her own safely. (My reasons are for another conversation.). I am doing this 100% solo (my only sibling is dead) and My mother will be 97 years old next month.
We are now on our 7th year of this and there are a few things that I've learned.
It's my opinion that if you move your mother into your home, you will ultimately be taking on 95% of the daily care duties and 100% of the night duties. Can you navigate work while sleep deprived?
You mention that you have a life you need to get back to......I had one also...
Be prepared that it will be a huge struggle to keep that life over time. At first, I was able to maintain my life as long as my mother's health was fairly stable. But nothing stays the same, and as her care needs increased, my life decreased. Now I still have only a fraction of my own life.
Expect that to happen.
Sitters - other caregivers, etc.....
I've had a variety of care ladies coming in to stay with my mother so I can get out. Two of them have been with me since 2020 and others have come and gone and had to be replaced. (I hire privately and have not used an agency.) The sitters are about 50-60% reliable overall. Either they are taking a trip, or they or someone in their house is sick (I never allow anyone in my home who has been sick within the last 7 days), or they have an appointment for something or other and can't come.
So, be ready to have to change or cancel your own plans at a moment's notice.
Example: It took me from September to December - making and then having to cancel and reschedule appointments - to have my annual exam and Pap smear. Very frustrating, but a reality.
Need sleep?
I have not slept through the night but a handful of times in the past 4+ years. If I have to get up once a night with my mother, that's a good night. I have had many, many nights that she kept me up half the night and at my age (64) that is destructive emotionally, mentally and physically. My mother can wake up even after having 2 doses of Ativan. There is no sure remedy that I have ever experienced that can guarantee sleep.
Do you like to travel? Go out in the evenings? Garden?
Since my mother came to live with me, I have only spent two nights out of town and that was to see my son graduate from college in 2018. Just getting a sitter to stay with her so I could go to one dinner party was hugely stressful and not worth the aggravation. Then minute I walked in the door, she started calling me after having left the sitter alone the entire time I was gone. Very frustrating.
While I type this, I'm sitting in the house with her, because of course she can't be left alone. It do this day in and day out.
Suffice it to say that eventually someone will have to perform all of her "activities of daily living" for her, all the way down to brushing her teeth and clipping her fingernails and everything else you can think of.
As the years wear on, your family and caregivers may just drift away, because, well, you're there, and "things come up" etc. etc. I would prepare for that as well.
Nothing wrong with bringing your mother to your house to live, but I would recommend that you count the cost. No one told me that.
Your home is no longer your private sanctuary. It's where you work - after you work if you're able to hold down a job - and not where you relax.
You will have the new vocation of running a care home for one. I wish you all the best on your decision - just make sure that you can do it alone if your other caregivers and family don't stick it out.
Make sure that you are in peak health, emotionally, physically, psychologically and spiritually and that your marriage is healthy....because doing this will threaten to crush you in every way.
I wish you the best.
This second wind will die down , they will scatter and you will be left with all of it to handle .
There needs to be a realistic discussion about the care that family can and can not do and the funds ( mother’s money ) available for paid caregivers or placement . If your mother owns a home it can be sold to pay for a facility . A few months before her funds run out apply for Medicaid .
I have been doing it for 2 1/2 years now. I am currently looking to place him for at least this upcoming spring and summer to try and get our life back and get a break.
Will evaluate after summer.
My health has really taken a toll.
Best to place your Mother in the beginning a good Board and care home for her situation and her condition would be better. I've gone to 6 of them recently and out of the 6 I would have placed him in three of them.