In home care or nursing home? Finally he agrees that we can’t do it without more help. What should our next step be?

Hospice care depends on the particular company. They aren’t all the same. Do research and select the appropriate one. Hospice can be wonderful. It’s end of life palliative care.

Thanks to all who took the time to respond and share their experiences. It has been very helpful. ❤️

PA Lynn, On 12/24 you said, " She needs someone round the clock, some days more than others. And **he** will be starting with chemo pills in Jan, so now is the time we need to act."

Is your mother or your father starting chemo pills in Jan? If it's mom, I'd like to say something. We treated my mthr's colon cancer with surgery and she refused the chemo. She was about stage 5c Alzheimer's at the time. Had we realized what a long, dreadful journey this dementia would be for her, we could have allowed her to slip away peacefully in her sleep. Her worse pain from her tumors was behind her and her low hemoglobin meant that she was just days from slipping away. We pumped her back up with transfusions and surgery, and she's been in memory care another 7.5 years so far. It was just a year before she did not know who we were at all.

The book, "Being Mortal" by Atul Gwande looks at the end of life and the issues and consequences surrounding our interventions. He's a research doc at a big Boston hospital and my DIL almost took a job helping him (but decided to stay with the baby instead!). I am greatly thankful for his insight and wish I'd known all this before we started on this journey.

I am thankful that mthr refused chemo as that meant she did not have those side effects. The 5 year survival rate for her mix was about 30%. She may have survived, but she was not there anymore. I would no longer subject a moderate dementia patient to cancer treatment to experience a longer life of confusion, fear, and wasting away.

The Alzheimer's Association is a wonderful resource for finding help and support even for situations that do not involve Alzheimer's. There may be a local branch in your area that has researched and rated Home Health Agencies and offers support and "how to" groups for caregivers. They are much more helpful than the Area Agencies on Aging.

Hi PAlynn,

Folks on this site understand what you're going through. It's tough- but it's true life and this is the current phase of your parent's life- and yours.
My experience with my parents has taught me how completely dementia chips away at all a person is: temperament, physical health, life skills...everything.
Caring for your parent (your spouse) as they move through these changes can be debilitating. At the same time it is a part of life, part of family life to care for those your love. The "promise" is possible to fulfill. It CAN be done. But, with certainty, it will change you, as you learn to "be" the one to change, to become more supportive accepting that all is different now.

You write that your dad "has always balked at hiring an agency". He still wants to be her hero. It's what they do so it's helpful to incorporate that into home care.
So, the help he hires "supports the hero/and the child of the hero (you) so that you can be strong for her (his wife, your mother). Whether you two continue this support at home, or in a facility, the reason/discussion is the same - how to support the hero/the family.

As far as your mom's behaviors - this is the disease. The expectations we have for our loved ones are our own issues - they have nothing to do with our loved one.

If she "fights going to the bathroom", she is not fighting, she is scared and pulling away from something that scares her. Instead of suggesting the bathroom, I often tell my mom, "I have a surprise for you". We walked together to the bathroom. When we open the door, I just direct her to the window (or the space heater). Come over here Mom -it's warm. Then I say, "mom hold onto the handrail. I'm going to lower your pants so you can sit on the potty by the heater.
Changing MY language does much for the situation. She's intrigued by the surprise. She hasn't been told to go the the bathroom. My focus was never using the bathroom - it was almost incidental and before you know it, we are both aligned to the same goal. (But, I made the change. I adapted.)
Sleep too- changes- My mom is up and down all night, sometimes until 6 am, sometimes just 3 am. This is why I'm at this late hour. I have cameras in the house and motion sensors that alert me. She sleeps late during the day. I sleep late during the day. (I make the change. I adapt.)
Whether your Mom is cared for by you and your Dad at home or in a facility, caregivers are responsible for changing/adapting. (Even doctors are not good at adapting. One said to us once in the hospital to open the shades while Dad was napping- that he needed to sleep during the night and be awake during the day.) Your Mom is not doing anything intentionally. She's living her best life that she's capable of. Every day, her life is more challenging that ever before, more confusing, scary- like walking on an uneven sliver of land, unknown and never understood. Though you don't recognize her, she's still there, and accessible from time to time, in bits and pieces. Nothing will ever return to how it was, of course. When caregivers adapt with love and patience, loved ones feel loved and their lives are a little easier, a little calmer.
Follow the good advice of the other posts.
-Get Mom's doctor to write a prescription today for Hospice. They are wonderful. They offer a lot of support in the home, too. I asked for everything- baths five times a week, social worker, nurse, everything. They have tons of experience, are patient, can advise and listen.
-Schedule a consult with elder law attorney(s).
-Find time to celebrate your family. Re-tell old stories together, look at old pictures. You are all living and loving together right now. It's hard, but it's family. (I moved home to be caregiver for my parents 3 1/2 years ago. My dad died of ALZ sixteen months ago. Mom is living with ALZ too. They often took turns not knowing who the other was, but they lived together, in their own home, as man and wife 64 years.)
My best to you...

Speak now to a Social Worker. I Feel you are Going to Need a Nursing Facility, Get their Financial Affairs in order.

I am sorry your local AoA wasn't helpful. Those are supported with our tax dollars and should be of better help if only to refer you to a better source. And I am also sorry to say while there are some good people out there, I understand where your dad is coming from about having strangers in the house. But the bottom line is he and you need more help if she is to remain at home. Dementia/Alzheimer's is enough, but a medical issue on top of it...Andy you say that dad is self-pay, but what about mom's care? I would immediately explore hospice. The goal of that is to let people pass at home, but support that. They can bring in resources and tend to be a higher caliber of person. I would sadly guess that if/when the level of support needed that you pay privately for breaks you, you might be forced to consider the nursing home which I know is a devastating thought to people who promised each other never. For good reason. From what I've heard, although mom will then have supposedly 24/7 care...and you won't be on call 24/7, care be inconsistent, and you will be concerned and making trips to check on her. But don't jump to conclusions...call around and see what hospice programs are in your area (and check more than one out if you have that choice) and you might want to see what resources exist if you have a local Alzheimer's Assn. Good luck...

It's great that you are seeking legal advice. I agree with several who said that posted comment about needing to have all assets below $2000 to qualify for Medicaid is not correct - it is the person who NEEDS Medicaid that this applies to, but it is best to discuss all this with an appropriate attorney. That said, you did question whether this attorney is elder law knowledgeable. You can check here:

https://www.naela.org/findlawyer

Check can by zip or by attorney name, your choice!

Note that Elder Law (any attorney really) won't be cheap, but their knowledge would be worth it if they are qualified. Many offer a first consult (~30-60 min) for free. Have all questions written up to save time and money and take notes!

If the income is low enough for your state (Medicaid rules vary widely by state), there are options - the attorney should be able to guide you. Some in-home care can be provided by Medicaid as an alternative to a NH. Also if your dad was a veteran, he might qualify for some assistance there too.

This is a tough decision. In home care is jot without its pitfalls. First, the agency and its staffing. It sounds as if you already have agency involvement. Can they provide additional supports for the evenings and weekends? Would a live in be more appropriate? It certainly would eliminate multiple caregivers for your mother. However, the cost can be prohibitive. Nursing home care is expensive too but when private funds are exhausted, Medicaid will then pay. Since the nursing home industry is a business, it would be to her and your advantage to facilitate an admission while you have private funds rather than exhausting funds for home care which then will limit your choices of nursing facilities. Most state's have a division of assets so as not to impoverish the spouse who resides in the community. An elder attorney would probably be very helpful in terms of managing assets in relationship to Medicaid law. In terms of the Area Agency on Aging, perhaps its not the agency but the worker representing the agency. Maybe requesting to speak to a supervisor in the agency would be helpful. In terms of finding a nursing facility, I would suggest accessing Medicare.gov/ nursing home surveys. I would also suggest reviewing them on the state department of health website. You can also print out a checklist to review the facilities when you tour them. Touring is a must. Good luck with your decision!

You really should find out if the lawyer you are seeing is a certified elder care attorney. It makes a huge difference in how far your Father’s money will go! They know all the ins and outs of the Medicaid rules. They can create trusts and rearrange assets to help your Mom while making sure that your Father has money for his own care. You. Really. Really. Don’t. Want. To. Disregard. This. Advice.

Time for hospice assessment, then deep contemplation whether to relocate her or go the extra long mile at home. I hear you... I'm exhausted with my situation too. It is life altering. I don't think as caregivers we recover from our self sacrifical duty with no personal damage... can only wonder for now, waiting the inevitable.

are you sure she's just not impacted from constipation? You need to keep them a bowel schedule. My mom did very well with a three times a week bowel movement and usually prune juice down her peg tube with some coffee would get her going a few hours later. If not, then I would use a glycerine suppository.

It can take 2 to 3 weeks to die of dehydration..something to think about if she stops eating/drinking and it's very slow painful way to go even with morphine.

I kept my mom very comfortable with a feeding tube -- takes work, but I never had a complication with it. including daily dressing changes. Never clogged either.

If your Mom is not eating or drinking, she might be ready for hospice. Medicare covers many more services (home aides, etc.) and equipment with hospice care. You'd have to speak with her primary care doctor to see if she qualifies.

Thank You for caring for your loved one! I am a therapist who works with families dealing with these types of questions. Years back my Dad with terminal lung cancer and no voice box laid in bed for 3 years until he died,1 week after he died my grandmother died from Alzheimer's Hell. She laid in a hospital bed across the hall from my father! So I have been there!
I suggest you ask yourself WHAT would you want if years from now it was you who was so ill!
Most people would want to be at home ,but I have been there BUT I AM NOT IN YOUR SHOES! One thing that can help your decision is to ask yourself this question " years later ,if your loved one passes before you do would you have any guilt based on the decision you end up making? That answer will help you a lot!!
With Respect and care,God be with You,
Dr Jack

Hello, I'm sorry you have to go through this. Ten plus years ago when Dad was diagnosed with Alz, we didn't know anything about the disease.

Dad passed in Oct. I am still trying to find myself back to normalcy. My Mom is still living but medically nothing like I had to endure with Dad, at least not yet.

I did learn a few things:
1. I am not a medical expert. I do not have a medical degree nor am I a Neuro chemist. I cannot fix a disease that has no straight path. All I can do is do my research and do the best I can.
2. I am not a financial expert. My parents saved money but by no means wealthy. I was able to save most of their money until this last few months when Dad required 24/7 care. You will and need help now. I hope you Mom is on hospice already and ask them for any references other than agencies. There are excellent providers out there. I could not have had Dad at home without them.
3. I learned Mom could not make any decisions. She was stressed, exhausted with Dad's illness. We battled constantly at the end. She didn't understand I could not save Daddy.

When Dad started sleeping more, I knew he was progressing to another stage. He sometimes did not want to get out of bed. About 4 mos before he passed he went through what I called his "Sleeping Beauty mode". He slept for a week. No food or drink. We could not wake him. When he woke we started with plenty of fluids and soft foods. He wasn't weak like what I would of expected. He was his normal and hungry.

He had these episodes every month. Of course he was losing weight and his b/p was getting weaker. I put him on oxygen and he looked better but still continued to decline. The body could eat but the physical body was going. No one could see that except for me and the caregivers.

Dad died peacefully Oct 27, 2019. Everyone said he looked great at the end however me, not so much. They became your children and it's tough.

I know that I did all I could and That's all any of us can do. GOD BLESS!

Talk with dad about what would be the "ideal" and what would be acceptable "worst case situation". Reality will be somewhere in between. Decide together the kind of help you need: sitters at night so you both can sleep, others to do morning and evening care...? See if other family members, friends, and/or members of your faith community are willing to help with the tasks that are burning you out. Get hired help for the rest - as you can pay for. If she is refusing to eat or drink, she will not last very long. Talk to her doctor about how long mom can last this way and if hospice can be prescribed.

Hired help. Most home health care agencies can do assessments to help you with seeing what tasks your mom needs help with. Most home health care aides want 4-12 hours shifts (usually 8 hours) and are paid at least minimum wage. Those through and agency cost more as do CNAs, certification costs more and is more reliable. Assisted living and total care residential facilities usually cost more than have occasional home health care assistants. If mom is in "hospice", most health insurance companies will cover the cost for in-home or facility care for a certain number of weeks or months.

If she is not eating and won’t drink fluids, the situation is becoming dire. Do you know what your plan is if she stops breathing? Is she a formal DNR? That could happen after 48 hours of no fluid intake. Not trying to freak you out but just be aware.

Hospice at home is not going to provide 24 care. They will provide some care hours and a nurse visit once or twice a week. But they can provide equipment and help get her medication hopefully to calm her down and give her some peace. I think your mom is in end stage due to refusing food and fluids. Unless you and your father are ready to deal with that on your own at 2am, I would consider placement. You might not have time to tour facilities. Some hospices have their own facilities as well.

Thank you all for your responses and suggestions! ❤️ We have a meeting set up in early Jan with the lawyer to see what direction he needs to go. I’m not sure though if he is certified in elder care law. Nursing home is a last resort, but as the dr says don’t write anything in stone. I agree about the expense. Mom was in NH for a week a year ago for therapy and it didn’t go so well. That’s why we are leaning toward in home care. Our options in this area are somewhat limited. She needs someone round the clock, some days more than others. And he will be starting with chemo pills in Jan, so now is the time we need to act.

You have been on the front lines in caregiving since 2016. You are doing the evenings and weekends. Do your work? I also have to ask, do you have any siblings? Please consider taking care of yourself. You deserve a life, despite what promises your parents might have made to each other. It isn't fair to loop YOU into fulfilling promises THEY made.

Please consult an eldercare attorney.

I hate to say it, but take of them until the end. Nursing facilities are not the answer. They are horrible. I took care of my mom and dad. My dad passed and now my mom lives with me and I take care of her. She was a tough one at first, but I put her on Prozacs and she’s much better. She’s a double amputee, on dialysis and I have an 11 year old daughter, so just imagine the stress I go through. They are our parents and they don’t have much time here, so have a little compassion and do the best you can to continue to care for them at home. Those facilities are horrible. I hired private in home care services to assist because my mom’s income is too high. I wish you the best.

I would think that hospice combined with agency caregivers could give your dad the peace he wants - taking care of mom in house while dad is able to have her close by. If the ER mentioned hospice, you should run with that. Mthr has had fantastic medical care and guidance on hospice, with her weekly nurse keeping me updated on her progress and the aides several times a week. It really eases the burden on the family. She can still be placed in a nursing home or memory care if you need to - the facility will be her home and hospice still visits there. Hospice as soon as mthr qualified has been wonderful.

PAlynn, we found it was most informative to talk directly with the Admissions office at the local long term care facility ("nursing home") where my FIL is now living in personal care. He went there first for rehab after a hospital stay in the early Fall so had a 'taste' of what to expect... and he was in skilled at the time, not in his own private room in personal care. For him, it worked out in the long run because he loves the company and excellent nursing care and therapy he now receives. He is self-pay for now... but if he ever needs to go into skilled nursing he'll have to go on Medicaid and understands that.

The admissions officer we worked with was wonderful... she was extremely knowledgeable and knew exactly what we needed to do because she had seen the same situation countless times over, as will any facility you choose to talk to. Even if your dad balks at the idea, take the initiative for yourself so you have some idea of what to expect in terms of cost. Sadly, you will end up resenting both of them in the long run if you try to continue as you've been doing, and that's no way to remember either of them... we saw it happen with my MIL because, like your parents, they made promises to keep each other out of nursing homes no matter what and then for the last 10 years of her life her kids had to be her caregiver at all hours of the day. It was not pleasant and certainly not a memory any of us wanted to have of her.

What Barb said. Make sure that attorney is a elder law certified. They are well aware of what Medicaid laws are in your state. Medicaid will not impoverish your dad. He is the spouse remaining in the community and their home. No need to panic, but get to that attorney very soon.

Caring for mom could very well be taking a significant toll on dad. If something happens to dad, then what? Often the well caregiver spouse will pass before the partner. It is a very stressful job he has. It is not a failure to get mom the care she needs and deserves.

The nursing homes are very different now from 30 years ago. They are much more tightly regulated.

I think it's an excellent idea for you to seek advice from her doctor, and I hope you'll get a helpful and sympathetic response.

I can understand you wouldn't want to press your father on the subject, but what you could do about the hospice evaluation is contact the hospice service yourself and ask them to explain exactly what would happen if your father agrees to it. Then you'll be able to explain it to him in turn, and that should help him be less anxious about the idea.

How has your mother been since the non-diagnosis in October? Any further major problems with her bowel function?

Please understand that, despite what a poster wrote below, your father does NOT need to impoverish himself to place your mother in a facility.

I agree that getting a hospice evaluation is a good idea.

Please get him to an eldercare attorney so that he can arrange his affairs properly.

‘In home care or nursing home?’ often boils down to money. Find out the local hourly rate for in home care ($20?), and multiply it by the number of hours in the week (168), and that’s the weekly cost ($3,360). Multiply by the number of weeks in a month (4.3) to get the monthly rate ($14, 448) and the months in the year (12) to get an annual cost of $173,376. Find out what ‘extras’ are included in the NH charge, and add on the cost of those if in-home care won’t cover them. Compare the grand total for in-home care with Nursing Home rates, and with the money available.

In-home care can be less if there are ways to reduce the number of paid caregiver hours, but can require a lot more input from the family to organise – it isn’t always smooth.

In general, one-on-one care is simply unaffordable. If you can’t do it, there is no choice. Don’t blame yourself for it, it isn’t your fault.

The Wife, Mother that your dad promised not to place in a "home" no longer exists.
If asked 20 years ago if this is what she would want her husband or you doing what would she have said?
Placing her in Memory Care she will get help 24/7/365.
He can become the Husband again.
You can become a daughter again
You will be able to be able to relax and enjoy being with her rather than having to worry about changing her, doing the laundry, worrying about getting a bath done, cleaning up after breakfast, lunch and dinner.
This is not a failure, this is not giving up this is trying to give her the best care that will not take a toll on your dad's health. (statistics show that often the care giver dies before the person they are caring for)
It might be time to look into Medicaid and that may take a while.
Call the Agency on Aging again and keep at it until you get the help that he needs.
Would your mom be able to attend Adult Day Care? If so that would also give him a break a few days a week.

Medicaid is not option unless all resources are under $2000. a month. If they are married, his income counts.

Once people liquidate their savings, stocks, bonds, boats, they are able to get Medicaid.

Waivers is decision not to admit to institutional care.

You have to be approved by state, and then have RX from doctor for number of hours.

See Office of Long Term Living, Department of Human Services in your state.
Make sure if you have private pay or in home care, you remove valuables. Camera is allowed to observe patient and give security in private home. See your state's laws.

Well agreeing to need more care is a big step. Congratulations on that! Coordinating in home care can be a stressful proposition as you’ve probably learned from having the weekday caregivers. Trying to manage 24/7 coverage is tough, even going thru an agency. I only had help on the weekends and it still was stressful and a disaster half the time. And your dad doesn’t want more caregivers in the house, and he will still be in the house probably wanting to be involved in her care. So this probably won’t relieve him/you of work or stress much at all. I would start looking at skilled nursing facilities or memory care if she qualified for that. If it’s close enough to the house and dad still drives he can visit her every day and have meals, or visit as much as he wants. I would prescreen a couple and then bring him to check them out. Current NH are nothing like they were 30 years ago.

Have them tour AL/SNF so they get an idea of what different places are like. They are not all the same.