I am an only child. Moved to Houston from my home in New Iberia, La. in Mar 2020 to care for my Mom (Dementia, MCI, and chronic incontinence). Dad has just given up on my mother - who is a lot in this stage of her Dementia and MCI, coupled with chronic incontinence. She's become very moody and doesn't want to accept the help in the mornings and evenings that she needs from him in regards to cleaning up, taking off, and replacing pull ups/pads; washing, brushing teeth, dressing, etc. He just makes sure she has everything she needs in the bathroom and now leaves. She is resistant on having me in the bathroom with her. If she washes, takes off a used pad/pull up, cleans, is now what "I" hope for. Best "I" can do is ask her the questions she hates; "Are you wearing a pad," "Are you sure," "Did you brush your teeth," etc. Most times she has forgotten the pad and gets impatient with having to go back in the bathroom to do it all over again. This "process" usually takes anywhere from 1:30 -2:00 every morning and evening. She is just ornery when it comes to someone telling what she needs to do - because she can't remember to do so? (MCI)
It's just really tough right now. Before you ask, "I" have set up in home health care on, get this, 3 occasions. The first, Dad allowed her to cancel WHEN THE LADY CALLED TO TELL US SHE WAS ON THE WAY! Smh. That was about 9,10 months ago. Next time I set it up, again he "allowed" her to change her mind before she was scheduled to come - this was the time when the "Area Agency on Aging" denied me another chance to get benefits. I understood.
The next time "I" set up healthcare was with Medicare and a highly rated agency dedicated to home Healthcare. I vetted the young lady that was selected. She was perfect credentials wise. She washed her hair for the first time in years! (Yeah, Dad hasn't done it. Won't bathe her either? But he is an INCREDIBLE husband and father. He has recently had a LOT of health issues. During this time that I have been here and Covid, my Dad has been hospitalized (4) times with heart related issues. And now has a pacemaker. Dealing with Mom during those times was almost too much. Especially when we went through the unbelievable winter storm here in Houston in February with no running hot water and no lights for 2 days! It was awful.) The lady did an uh-MAZING job with Mom. Mom had nothing but wonderful things to say about her.
Later that evening, we noticed Mom might be having yet another UTI. So I was able to schedule an appointment for the very next day. She had a really bad infection that led her Gyno to refer to a specialist later that day. So after THAT appointment, which led to meds and Mom knowing she had an infection - out of nowhere, after we got home, Mom told Dad she didn't want anyone back in the home to wash her? And you guessed it, he allowed it - again! I was so withdrawn after that.
So here we are, falling apart. I'm 58 and tired. Sleep disorder and 4 screws and 2 cages in my back. I deal with "permanent, chronic nerve damage" daily on a 8 level. But it doesn't limit me. It hurts all the time, but I must go on. I do all of the cooking and running around. I clean the bed and bathrooms daily and administer their meds. My Dad requires vitals taken (BP, Heart rate, O2, and Temp) 2X's/day. I cook (2) meals/day about 5x's/week. He manages to get in some light yard work some days. He has glaucoma, so he rarely drives. It's just not best. I wake with him at 5a everyday to make sure he's stable. Some mornings before the pacemaker, we were dealing with BP around 85/45. There have been (3) EMS trips during this period that I have been here since Mar 2020. I have only been back to my home for a total of 2 days on (2) separate occasions. One trip was a same day turnaround. I haven't been home since September 2020. I look forward now to 6p daily when they usually go to bed. I also cook and care for my 11yo Yorkie. I'm tired - mentally and spiritually. Sorry 4 the vent
In the meantime, until you get things organized, get yourself educated about how to approach your mom with dementia - a lot of the pushback from her will go away with the right approach - truly!
Please read Bob DeMarco, who took care of his mother with ALZ and created a method to calm his mother and create a happy son/caregiver relationship with his her:
https://www.facebook.com/alzheimersreadingroom/
and
Rachael Wonderlin - who is a professional Dementia Care Consultant who can help you make a decision - you can even call her for advice:
https://rachaelwonderlin.com/dementiabyday/dementia-by-day-blog/
Both write short articles so it is easy to read one or two at a time and choose the topics you most need help with. You will learn quite a lot from them and the household dynamics will change. Understanding the disease in a practical way, will help you tremendously, no matter where your mom lives.
I do however agree with most here, that a MC facility is the best idea (the aides you get in the house don't necessarily know how to approach a person with dementia - it's very different.) Then you can go back to being a son, not the man who is trying to get her to do what she doesn't want to do. It will be a great relief for you and your dad. Your mom will be relieved too - she will feel safe in professional hands. Once she is in, Visit her very often and never let up on the facility - your job will become, as son, to monitor that all is being done properly for your mom, instead of doing it yourself:)
Finally - you may consider moving your parents to a facility near your home in your state. It's one more thing to consider and may be very difficult for your parents to transition to a new state, but if they are moving to a facility that is already a change, so in the end the big effort to do this now may be a good thing for all. And the care management company will be a help in this situation as well.
All the best. You have taken the first step, which is to reach out to an understanding community here. It will get easier as long as you keep moving forward and make steps to change the situation.
Blessins,
HIS...
The thing is, reading again through your post, there does seem to be a fair old bit of work creation going on - several things you can delegate (personal care support for your mother, the "vitals" for your father, anything more than ad hoc cleaning of the bedrooms and bathrooms) and some that seem a bit barmy. Why in heaven's name are you cooking for the dog? I love Yorkies (hope to have one in my senior years, plan to name her Blossom, she forms a key part of my retirement dream) but nothing on earth would induce me to cook one a special meal. There's perfectly good, wholesome whole food for dogs out there, y'know. If this is recreation for you it's different, of course.
I will definitely look into and try to put into practice your other suggestions. Thanks for everything, again.
Blessins...
Early in 2018, dad's congestive heart failure caught up with him. In and out of the hospital multiple times; my brother moved in with them (leaving his wife at their home.) I took day shifts, and I'm in my 70's. This got to be too much since their house was not set up for elder care (steps, tiny bathrooms, too big a yard to maintain.) Dad decided to sell and move them to AL, where he passed away after about a year. Mom had no recollection or cognizance that he died.
She was immediately moved to the memory care wing. She's now on Medicare hospice status, which provides more intensive medical supervision, after she got COVID (and recovered.) She wears adult pull ups and often refuses to get showered/shampooed when the aides come in to help. We visit several times a week, bringing her treats, magazines and newspapers to keep her busy.
Your dad is sick himself and is probably struggling with that plus dealing with your mother. He is not able to "go to the mat" insisting on old routines for her. She needs memory care, especially since she's incontinent. An AL facility where they can live together might be an option, but being cooped up with an Alzheimer patient all day can be very detrimental to mental health, so they may need to be separated. If he goes to AL and she goes to memory care in the same facility, he can visit her every day. You need to quit being caretaker. You've done enough.
It's time to find somewhere that has the level of services both your mother and your dad need. Your mother needs memory care. Your father needs assisted living. What assets do they have that can be liquidated to pay for their longterm care?
"I'm 58 and tired. Sleep disorder and 4 screws and 2 cages in my back. I deal with "permanent, chronic nerve damage" daily on a 8 level. But it doesn't limit me. It hurts all the time, but I must go on. I do all of the cooking and running around. I clean the bed and bathrooms daily and administer their meds. My Dad requires vitals taken (BP, Heart rate, O2, and Temp) 2X's/day. I cook (2) meals/day about 5x's/week. He manages to get in some light yard work some days. He has glaucoma, so he rarely drives. It's just not best. I wake with him at 5a everyday to make sure he's stable. Some mornings before the pacemaker, we were dealing with BP around 85/45. There have been (3) EMS trips during this period that I have been here since Mar 2020. I have only been back to my home for a total of 2 days on (2) separate occasions. One trip was a same day turnaround. I haven't been home since September 2020. I look forward now to 6p daily when they usually go to bed. I also cook and care for my 11yo Yorkie. I'm tired - mentally and spiritually."
So how long and until what happens do you intend to continue doing it all for your parents? What happens if you become so ill that you can't take care of them?
YOU matter, too! Have you considered facility placement?
I had a homecare client whose husband was similar to your father. He didn't know how to handle his wife's dementia either. So he ignored it. For several years she was mainly bedridden in a hospital bed in the living room that I arranged for her. Before that she slept on the couch. If she messed her diaper after I left for the day she stayed in it until I come the next morning because he would not change her. He'd put some food in a bowl for her at supper time. If she was unable feed herself, she didn't eat because he would not feed her. She was extremely ornery and downright nasty and it scared her husband.
Their situation improved when I brought additional help in and we handled everything for them. The husband was grateful and also open-minded. He understood that sometimes we had to be a little tough on his wife to do what she needed. Like in the mornings. She would scream, hit, bite, and carry on every day because she didn't want to get washed up and have her diaper changed. She'd scream and cry for him to help her and call the police. I'd send him into the kitchen to have his breakfast and insist he ignore her until it was quiet. He always did. She would be fine after the washing up and changing was done. He wasn't though. It was too much for him to deal with this ordeal every day. So, he started leaving in the mornings when I arrived and he'd have breakfast out.
I think you need to have a serious talk with your father and make him understand that both of them need several hours a day of homecare. If he's still with it, they won't need a caregiver to be there at night when they're sleeping. Your father has to learn about dementia and be reassured that it's okay to be afraid of the behaviors that come with it. That's why we have professional caregivers. I've dropped dementia clients from my service over the years because the care situation became dangerous to me. A person can be out of it mentally but still strong and mobile.
For you, make plans to move back to your home if you want to.
If you're going to stay, arrange the homecare and make your father understand that neither of you are going to interfere with the caregivers. Keeping an eye on new ones is different than interfering with the work. Your mother must get established in a daily routine with them. When it's time to do her care, you and your father have to leave. If you won't actually get in the car and go, then go outside. Go in another room. Just don't go to mom. If she carries on during the care, ignore her. If she's demanding that they be cancelled for the day, tell her that's not happening. Establish a routine and you'll see things improve.
I think that's where you are right now. You're just going to need to get your mom placed, even without your dad's cooperation, in order to save whatever life he has left.
So, remind me what happened with the ideal match caregiver? Why didn't you overrule your father?
Got her contact details?
Rule for your Dad: when the care receiver is reluctant and wants to cancel the visit, LEAVE IT to the professional caregiver to negotiate acceptance. It's part of the job, and we get pretty good at it. No need to argue with mother or oppose what she says, just reassure her that nobody will even try to make her do anything she isn't happy with.
Your parents are adults. Your father can make decisions for them. Will they be good decisions? - probably not a lot of the time but he is cognitively capable of making them and should be allowed to do so.
If you try and keep things as you feel they should be, you will simply end up exhausted and ill yourself. Step back and leave them to it until your father realises he cannot manage and he has to make decisions for your mother on the care she and he need. You cannot make his decisions and whilst you keep sorting things out he will not make them - it is very hard to watch a situation which we feel is inadequate or unhealthy, but we just have to leave them to it until a facility for care is needed or they admit to needing assistance.
Take a break - take a holiday for a few weeks (even if that is simply not seeing them), let the situation unfold without you, and then if necessary seek advice from an elder lawyer about how the care that is needed for mother and father can be arranged or what you can do to help. Getting POAs drawn up before they are needed is something to consider. Hugs to you.
Although not doing things as you would, he is her spouse, not her nurse. He is choosing his battles & stepping back from some.
Sounds like he is worn out already - becoming her nurse/caregiver may just kill him.
I admire you willingness to fly in & roll up your sleeves to help them both. With their battle of old age & illness. Love, dedication, bravery.
But ask yourself if it is worth it if YOU die in the attempt to save them?
Have a good look at your folk's living situation. They are already living in an assisted living - where you are ALL the assistance. Use your skills to build either a home care team around them or find alternative, appropriate living accommodation for them before you fall ill. Please.
1. your Dad is worn out. He is so sad/angry, probably mourning the woman he used to know.
2. your Mom is at the stage where her dementia is in the defiant stage. This happens.
3. you are frustrated that 'things' arent being handled propery, AND you are losing both your mother and your father.
4. Dad is the roadblock here, even if he goes off into another room.
5. first, do a little research on 1 0r 2 good facility(s) near your dad's home.
6. time for a sitdown with Dad and come up with a plan.
7. Move your Mom to the decided facility. Your mother will get good care, and hopefully your Dad will come back to life.
8. support both of them with your love, prayers, greeting cards, flowers, etc.
9 this is not perfect. life is not perfect.
I took some of her own furniture so she felt like there were familiar surroundings. Your folks would probably be able to share the apartment. Yet someone else would be taking care of your mom 's personal care.
The facility has activities all day long: they scheduled shopping trips and restaurant outings. This might solve your problem. Sending a huge hug to you.
I will call them first thing in the morning. I gave up trying with facilities because of the cost. I am playing Lotto just praying for luck. Smh...
Thank you SO much and may GOD bless you and cover you and your family from these temporary, perilous times we are living in at the moment. I believe in the power of fervent and effectual prayer.
HIS,
Kevyn
Psalms 71:12!!!
until then….
Have a heart to heart with your dad. Tell him you need to manage the outside help.
Make sure they have your phone number and know that the caregiver knows not to take a “no” from anyone but you. They shouldn’t call the home number, they should call your number. Ask them to give you a chance to help them gain compliance.
YOU and dad have to remember that mom CANT remember and so what she says one day will be different the next day or in maybe 15 min.
You need to take away ALL your moms panties and replace with pull-ups.
You can try taking each pair of panties and attaching a pad inside them in advance if a pad would truly take care of everything for now.
Anytime you are asking her a ‘yes/no’ question that has consequences, rethink your approach. Instead of do you have a pad on. It’s here’s your clean underwear (that you have already put the pad in).
Again, YOU remember that she CAN’T remember (except every now and then when she actually does remember).
Your dad has been through a lot. He may have cognitive decline of his own. But even much younger people will think their LO is being lazy or is “doing it on purpose” because they are too close to the situation, burned out and can’t see that the LO has lost the ability to cooperate or care for themselves.
Make sure they have their paperwork in order. POA, WILL, ETC. visit with a certified elder attorney well versed in Medicaid should they need it.
While your help is very necessary, it’s also very easy for their skill set to be at a lower level than you realize. In other words the old “enabling is disabling”
And RudyVee, what are your plans for the hurricane season?
I know how hard what you are doing is. You really need to make sure dad understands what you are able to do and not do. Don’t oversell it. If he expects you to watch out for them, he mustn’t make it harder.
Time to move BOTH mom and dad to a care facility, or YOU will precede them in death. It's very real--the stress will take you down. But you know that, b/c you already are there.
Start checking into facilities that take couples--move them to an apartment in a facility that will give them 'togetherness' as they seem to thrive on that, but also one that will brook no 'Don't come help us today, we're fine'.
That's just my 2 cents. One elderly person trying to care for another rarely has a good outcome. The 'sicker' of the two often outlives the 'carer'. And it sounds like you have had your own set of problems. As someone who also suffers pain on a daily basis, you have my utmost sympathy.
Its hard for the elderly to deal with change. Your Dad is having a hard time wrapping his head around this Dementia thing and not sure if you or him really understand it. There is no reminding anymore or asking "did u do such and such", its now hands on.
You or Dad take mom to the bathroom and make sure Mom washes up and brushes her teeth. You make sure she puts the pad inside her panties. Better yet, buy adult pull ups and do away with the panties. You/Dad take her to the bathroom every couple of hours. Do not leave her and expect her to clean up correctly. I sat outside the bathroom so Mom had privacy but went in and helped her. You can no longer leave her to her own devices. Her brain no longer works logically. All kinds of things go thru her brain at one time. TV and dreams become their reality. There is no reasoning with them. Think of Mom as a 4 yr old and how they act.
Alone your Dad is not going to be able to care for your Mom. He has suggested placing her in an AL. It may be the best thing for both of them. He can join her or stay in his home. My SILs parents lived together in an AL/IL community. He had ALZ she was OK. She could leave him knowing he would be watched while she played bridge or went on the outings. I think this is the only way you will get back home. Dad should not be allowed to be stressed out.
If you go this way, I would see a lawyer well versed in Medicaid. Medicaid allows for the splitting of assets. Moms split would go towards her care and when spent down Medicaid can be applied for. (A question to ask the AL is if Medicaid is excepted) With Medicaid, Dad would become the Community Spouse being able to stay in the home and getting enough from their monthly income (SS and pensions) to live on. Just giving basics here. States and situations very.
You need to do what is best for Dad. It won't be easy placing Mom but she is not going to improve. Eventually she will need more care than an AL can give. Dad can visit. Join in the activities with her. Moms place had entertainment come in. Parties all the time for birthdays, holidays and to just have one. Dad can enjoy the time with Mom and leave when he feels he needs to. Moms AL even had holiday dinners where families could join in.
Ideally, you can find an ALF that has a Memory Care wing b/c your dad may need the assistance himself one of these days, based on his health history. He can live in AL while mom is next door in MC, although it may be possible for both of them to live together for a while. Their house can be sold to finance their stay. My parents had to do this very thing as their health went down the tubes and in home care was not possible. My dad passed but mom is 94 now & living in Memory Care herself, requiring a whole team of people to care for her with advanced dementia at play & being wheelchair bound & incontinent, etc. If she's still alive when she runs out of $$ to private pay, I'll have to apply for Medicaid to fund her care in a Skilled Nursing Facility (I am an only child too at 64).
Wishing you the very best of luck managing a difficult situation & taking care of YOURSELF in the process. Don't discount the need for that b/c what if you break down & get sick? Who takes care of the parents then?
I am so sorry you are all suffering like this! Love just isn’t enough, unfortunately.
I think it is time now to consider placement for your Mom in memory care so that you and your father can continue on with the lives you should still have, with visits to your Mother. I know my own limitations, and would have known I could not for a day take this on, but I was a nurse and know what it drains from you, no matter you love the work and your patients to do this work three days a week, let alone attempting it 24/7, no matter having help as you describe.
It can only be your choice. I know you know the options that exist. None of this will get better. I am so very sorry and so wish you the best.