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My mom's Alz got really bad when she broke her hip in 2016. We have been caring for her at home since then. After an ER trip in Oct for a possible impacted bowel, she was diagnosed her with what her dr said may or may not be colon cancer. My dad also has poor health but has always balked at hiring an agency due to them being in his home. And he and mom promised each other years before that they would not put the other in a nursing home. So here we are.


He has help come in during week days but weekends and most evening are on me. I am running on empty, and her condition is fast deteriorating. Fights going to the bathroom, is very shaky and this past week has has to use the wheelchair, spits her food out, won’t drink her water, won’t sleep at night. We use Melatonin at times but she either sleeps until The next afternoon or else it has no effect at all. I’m sorry, I know this is just basic info. But I’m not sure what to do. I’m afraid for dad for what ever decision he has to decide. I am looking for advice from someone who has been there before. Oh, and he is self pay so whatever happens he will be paying out of pocket. Any advice on that would be welcome also. They are not wealthy, but was always careful with their money. Our local Agency in Aging has not been very helpful imo. I finally told him last eve that we can’t keep doing this and he agreed.

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???? Diagnosed with what "may or may not" be colon cancer? That's not a diagnosis, that's an educated guess! I hope your mother's doctor is working on giving you a little more clarity as soon as possible.

However; would you consider, and could you persuade your father to consider, a hospice evaluation? An evaluation would not commit you to anything, but it would give you guidance as to where you all stand at the moment and an objective assessment of your mother's care needs.
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PAlynn Dec 2019
Countrymouse, they did a CT scan when she was in the ER. They saw "something", a shading on the scan that appeared to be in her colon but without a colonscopy, they can't be sure if it is cancer. Of course we aren't going to put her through that. Keep her comfortable is what they said. I plan to call her dr on Monday and ask for direction. They ER doctor mentioned hospice, but no one has said any more about it. We had home health coming in but they discharged her last week.
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Bring in Hospice to get an evaluation.

medicare will pay for hospice in home care. So, it will relieve the burden of doctors visits, and the cost of all the supplies needed for her care,

I believe you really need to see a consult with an attorney that specializes in Medicaid and elder care. You might just find that it is the best way to protect your parents financial capabilities to conserve some for your Dad. Or, you might find that it will leave him unable to be certain of paying the cost of his own care. Either way, you can’t make an informed decision without knowing how the cost of care (home or NH) will impact your Dad.
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PAlynn Dec 2019
Thank you for your comments. He has a lawyer that we went to see a few years ago. I need to get back in touch with him and ask for his advice.
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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.
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SandyB66 Dec 2019
Hi Grandma 1954 - I really needed your well thought out response today. Although I have only been a 24/7/365 for my mom for three years (had to bring her to my place in California from Ohio) and it hasn't been too much of an issue until the last few months as she is a delight to be with, but her Dementia and Sundowners is getting much worse. She has severe arthritis in her knees, elbows and shoulders needing a walker (with help). Needs help with all ADLs.

I have been struggling with placing her in a MC center, as I was one who promised to "never put you in a home". Thank God she took care of her POA's and Living Will taken care of years ago (naming me), she has no home, car or money other than her small pension and SS. I have no savings either (small pension and SS too). I had to spend my 401K to stay with her in Ohio until she was able to fly, as well as pay all my bills at home too, in order to keep my apartment.

Got her on Medi-Cal (Medicaid in California), but haven't had time, with all I do for her) to look into whether they pay for Memory Care or not. I do know they have in home supportive services - but need to check that too! This takes so much time to do all the research, but I know I have to do it somehow.

Again, thanks!!
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‘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.
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Amywoody Dec 2019
We found that in home care was less expensive than the nursing home. Because my husband was/is in hospice, Medicare didn't pay for his room and board, so we were $14,000 out of pocket monthly. That amount covers almost three weeks of home care - not round the clock, but 35 hours weekly. And he is much happier and easier to manage at home.
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Promises made in youth, when one is healthy, seldom come to fruition. It sounded good at the time, but today, it is not a doable option.

Talk to him about doing the right thing for her, being placed somewhere she can get 24/7 care, tended to by clinically trained people. By not doing this, he is being selfish and obviously not using good judgement.

I wish you the best, keep talking to him.
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PAlynn Dec 2019
Thank you. He and my mother did not have good experiences with nursing homes with their parents 30 years ago. That is where this is all coming from. We need to have more discussions about it and try to figure out what will be best.
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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.
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gdaughter Dec 2019
To this day not all nursing homes are good although probably better than 30 years ago. Our government last I heard was looking to relax some regulations which did not favor loved ones and familys. They can be regulated and still not follow the guidelines or be understaffed or staffed with people who don't care or pay attention. Not saying this isn't an answer for some, but one must have their eyes and ears open.
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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...
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SandyB66 Dec 2019
Lovely ❤️❤️❤️❤️
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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.
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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.
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My mom had 24\7 care at home, with private pay caregivers “off the street”. Like your parents, mine were not wealthy, just scrimped & saved their entire lives. Hiring around the clock care isn’t easy & even not going through an agency is still quite expensive.

My mom’s case is different from yours because she was already a widow when needing care & wasn’t pulling our Dad down by staying in the home. While we spent every penny of her money to keep her home before she had to go to a nursing home, we did NOT have to make sure she had enough financial resources left for any care our Dad might need.

You’ve got a lot to think about & I know this is really tough for you & your Dad. Sending hugs your way.
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PAlynn Dec 2019
Thank you. I just feel like I am failing....at everything. I can't keep up with it anymore. I hate to admit defeat but I am so worried about his health. I don't know how much more he can take.
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