I need to make a decision fast

Started by

A couple of days ago mom was diagnosed with dementia and while at the Drs office she fell and broke her femur/hip bone. She had emergency surgery and is still in the hospital. SHocking to us all she is now having sundown syndrom. She must have been hiding most of this very well. She will be going to rehab. Her insurance will stop in 20 days.........she falls between a gap. She is still in the process of a divorce and so there for her assets are tied up, because of that she will not qualify for medicaid. Thats problem #1. Problem #2 is that in the mornings she is kind of like herself and pleads not to go to a nursing home but by afternoon she is WOW a different person. I dont know what to do, I dont know if I should hire a stranger to come into our home to care for her and hope that they take care of her or let her live iwth strangers and plead and cry all day. UGH this is so hard, we have limited resources here and when I ask other family members for their opinion everyone says "I dont know". I am an only child I have POA. Any insight?


I was also an only child with POA so I know what you are faced with. I do not know your full situation but from what info you provided you MUST focus on the financial problems first. If you can find a Financial Adviser who specializes in Eldercare Law for your state that would be a good start. Do your homework first to be sure this person has CSA credentials and has references in your community. DO NOT SIGN ANY PAPERS ON YOUR MOM'S BEHALF RELATED TO THE DIVORCE SETTLEMENT. If your mom has legal counsel for the divorce then make sure this attorney in briefed on the current situation. If she did not have her own own attorney then you need to get one. You need expert legal advice here--not opinions from Uncle Eddy or Aunt Matilda. Once you have the financial matters under control, then you can plan for your mom's Long Term Care. Also, DO NOT bring any strangers into your home unless they are from a Licensed Homecare Agency that is bonded. But that is a last resort. First try to enlist the aid of friends, neighbors and family members. You'd be surprised how much help you can get if you just ask for it. Be specific: can you bring lunch in for mom this week? Can you sit with mom for 2 hours on Thursday while I meet with her Doctor? You get the idea.
I just left a message for an elder care attorney to make an appointment. I did speak with family- My oldest daughter (27) is willing to do it m-f 8-4 (not sure what to pay her). I asked my son and his wife to give me one free weekend a month- they said they couldnt. My youngest would help at night if I needed to go out for something she is a cna and works at the rehab facility that mom is going to tomorrow. I guess what I really want to know is what am I about to take on? It was hard living with her before the fall she was hateful and grumpy and always asking questions- but now with this sundowners I dont know if I can handle it. If she were to go back to her old grumpy self that would be much better - she was grumpy and mad but at least she was in the present (unless she was having a delusion) and I know she hid the dementia very well by saying "I Know" and "yes" a lot. Stinker! But with sundowning, omg what can I expect?
Sundowning can mean a lot of things. Everyone is different. Sometimes there's agitation, wandering, pacing, acting out. It depends on the individual, and the stage of their dement. Full spectrum lighting can help, a little. But no one can advise you exactly what to expect since it's different for everyone. And if Mom comes home for a short period of time, she can be rehospitalized if things get worse. Take things one moment at a time, and stay calm. A soft answer and loving, but firm responses can disarm the meanest. Walk out of her presence if things get too bad, then come back, cheerily. Sometimes that will help, because one never knows what is triggering her responses. Try to find out, even if she has difficulty expressing it. While things may seem urgent, they usually work out better than we imagine. And many situations are fleeting and temporary. (May not feel like it sometimes.) Praying for you, because it helps! Take care.
Ezcare has as always great practical advice. I would like to add that you should take advantage of the fact that your mom is in the hospital to ask the nurses for referrals if you need supplemental help. You may be able to pick up a CNA who needs a few extra hours and has been prescreened by her employer (the hospital or agency contracted with the hospital). Another benefit is that you will be able to see in advance whether or not that person is actually capable providing the help you need.

As far as Sundown behaviour goes, it is called that because the behaviour is tied to evening behaviour - which is controlled by their circadian rythms. It is a catch-all term. As such, it is hard to stop/control the behaviour; so a successful strategy will be unique to your mom & her behaviour triggers. If you have enough stamina and time, you can start watching her and you will see a pattern. I will give you a laundry list of things that may or may not help just to give you an idea.

1. Use music to engage her brain, and mood - headphones if she will keep them on otherwise a cd player withspeakers is good. Try to start out with classical. If you go online to the major seller sites, you can even buy boxed collections that are marketed for new mom/baby - there is one I have used that is sleepytime, naptime music. She won't go to sleep, but it may calm her mood....depending on her hearing, keep the level low enough so she can hear, but not loud enough that it drowns everything else out.

At night make a ritual of dancing/walking in rythm to fun music - oldies that she likes. Get her singing. Whether you are Fred Astaire & Ginger Rogers or doing the latest showtunes doesn't matter. Feel free to sprinkle kisses & hugs as needed. (it's help your blood pressure too)

2. You have to check her meds and medication times. Some medications can cause drowsiness during the day & flip wake sleep cycles. Likewise some meds and combinations can increase agitated behaviour at night.
3. Diet always plays a role - keep a schedule, plan good nutrition and make food available at the times she may be starting to wander - check food webites for info. (Example: potatos increase seretonin. Turkey contains melatonin....a good diet can help alot)
4. Boredom & habit - she has to have things to work on & do. If you give her something that she can repetatively do, that will also take her attention for a while.
5. If you can afford it, like Ezcare said, hire or have someone in your family give you a break. It will not be easy - especially if there are additional hurdles like a divorce in progress.

Stay focused on evaluating her patterns and what you observe. There are never any easy answers, and sundowning continues to be a mystery. Take notes on & I hope stay on this board for advice & stress relief. There is an old country saying that has always helped me when facing tough problems - "if your socks aren't in your shoes, don't look for them in heaven". Which I take to mean that caregivers can only deal with what is - not what we wish.

That said, wishing you encouragement and sympathy for the challenges you are now facing. Hang in there.
I have seen with one of my husbands' roomates in a nursing home and it indeed did start every evening about the samr time so she would need help at night but you could start with medicare pending with the social worker she will have to spend down her assets but if she can not be left alone you have no other choice taking her into your home could very well be a big mistake maybe some professional in the nursing home could do an evaluation and if they feel she can be home alone or have aides at night they will tell you and you can go from there you could hire a CNA from the nursing home to cover the nights or more than one but I found it a mistake hiring personal from the nursing home you really need someone bonded from an agency for your own protection even though it is more expensive you can use the cost on her or your income tax and why is not her spouse getting involved if they are not divorced yet it seems to me he is still responsible and if not maybe she would qualify for medicaide- I would talk to an elder lawyer you should not have to deal with all of this we are not responsible for our parents medical cost.
Crislynp, you mentioned that your mom was hateful and grumpy before her fall and you didn't know if you can handle having her in your home if she becomes even worse. My sisters and I are facing a somewhat similar situation with our mother. I would like to know what the caregiver community out there believes adult children OWE their aging parents? Some parents, when they are young and healthy, abuse their children, are not supportive of their children, or only give conditional love. What is owed to parents like this?

It seems to me that as parents become old and sick, the adult children really become the "parents" and the parents become the "children". If this is the case, then I wonder if you, crislynp, as a "good parent" of your mother, HAVE to give in to her pleas to not place her in a nursing home. I imagine when your mom was the parent, she didn't always give you what you (as a child) thought you should have. Perhaps a GOOD nursing home is where your mom will receive the BEST care (and she might even grow to like being there). This doesn't mean you will be ABANDONING her!!! You and your children could visit her EVERY day and this way everyone would look forward to seeing each other and you can see that your mom is being well looked after. If you and your mom have had difficulties getting along before, I think it's doubtful that your relationship will improve now. It sounds like you might get some help from some of your adult children, crislynp, if you take your mom into your home but do you have a husband? What does he think? What are his needs? What are your needs? How is your health? How is his health?

I will probably be shot down in flames by all the wonderful caregivers out there who are devoting their entire time to caring for their parents but for what they are worth, these are my thoughts. Now I will look forward to reading the responses of experienced caregivers.
Austin, good questions to consider... And if you do get shot down, Ics, there's plenty here to defend you. Seems like there's two camps: those who do the Caregiving at home, and those who's loved ones are residing separately, or in facilities or institutions. Each person makes decisions based on their particular situation and personal choices. Neither choice is necessarily right or wrong, but the emphasis is on "choice," or need. We shouldn't be too quick to judge one another's situation until we have walked their path. That said, you have offered several good suggestions, and asked some searching questions. The answer to those will differ according to each individual's world view and belief system. Again, this is not a debate, but personal decision.

For some, adult "children" have had to assume some of the decision making for their parents. Ideally, this should be done respectfully, keeping in mind the desires and wished of their loved one. In cases where a parent was abusive, or difficult, does that mean we have no duty to them? This is a moral issue. Again, the answers will be as individual as the people answering them.

My own growing understanding and ideas have come from a variety of sources, including the Bible, my family values, and from ideas presented by Caregivers on this site. One parent is living in an adult community with other seniors, and one, by necessity, is living on the Dementia unit in a Nursing Home. Neither could care for themselves. And by necessity, one could not live with us. The other is a difficult, cantankerous individual, who makes those around her miserable. So, for our sanity and peace, she lives in a small apartment. Both parents lack judgment for decision making. As their adult child, I can choose to help, or not. To me, it was unthinkable to walk away. I consider that neglect and irresponsible. But caring for my Mom is emotionally challenging. Sure, I could hire it done, but I would ultimately be responsible to oversee her care. And if I gave the responsibility away, I would also lose the right to make decisions, were I to pass the baton to a legal entity.

On a "down day," I consider the options. Do I hire a professional to care for Mom? Again, I'd still be responsible to monitor the care she is receiving. Then I'd be watching two, or more! No thanks. And with multiple Caregivers, there may possibly be multiple problems and situations to deal with.

It always comes back to me caring for Mom. And this, with a combative, argumentative, complaining, and very negative individual. Encounters with Mom are never enjoyable. They push my buttons, my limits, and my abilities. But I have decided she will not get the better of me, and regardless of her attitude toward me, she will get the best from me. Someday, I will be grateful for my perseverance, tenacity, and determination. I am grateful to this site, and to the wonderful suggestions by fellow Caregivers here, who encourage me, challenge me, and applaud my efforts.

Do I have to care for a mean Mom? No. But I sleep better at night, and will not regret that choice in the future. Do I like doing it? Not always. But I like myself better for doing it, and I like myself better when I keep my attitude as positive as possible despite hers.

I also think of Mom's choices. She chose to give birth. She chose to clothe and feed me and also did a lot of nice things. Not everything with Mom was great or perfect. But I'm here because of her choice. She didn't choose to become sick or old, and needs help. Do I walk? No. She didn't walk out on me or give up when I wasn't the perfect child or teen. She might not have been the best Mom, but she's still Mom. Some days it's hard. Some days I'm weary, upset and downright angry. I hate it when I respond back to her in a disrespectful way, regardless of how she treats me. I pray for guidance, grace and joy. Some days I find all three. I remain hopeful, because God's still working on Mom, and God's still working on me. Just some thoughts.
Austin always has such good insight. She was especially right to mention the pitfalls of hiring someone independently rather than through an agency. Many CNA's working at hospitals (not nursing homes) are registered through agencies so the option is there to avoid the headache and heartache of dealing with independant contractors tax issues.

Aside from Carol Bursak, our moderator the go to expert (in my opinion) in dealing with difficult personalities it is Austin who did it with grace for a long time and made it look easy. She has been there, done that and supported so many of us with her courage and selfless sharing of what it takes to commit to caring for a loved one.

I hope that you find help and lots of caring support in dealing with your mom's medical issues - the sundowning- and the whole kit n' kaboodle of caregiving. It is not easy, not for everyone and certainly a challenge. For those who choose to do it - this is the place for support. Hope you stay awhile - we will be learning as much from you and how you handle your issues as you will from us.

with respect and admiration for your courage - Cat
God tells us to honour our parents. That doesn't always mean we honour the bad behavior, but respectfully honour their position. The Bible also says to give honour unto whom honor is due. Such as people in authority. Our parents fall into that category, as well. At least in our growing years. And as humans, we have an obligation to one another, as our brother's keeper. So much more our parents. As Christians, we are to be kindly affectioned one to another with brotherly love; in honour preferring one another. And if we are saved by grace through faith, we serve Christ when we serve each other. It's not always easy, but it is always right. So if we can look at serving the risen Saviour, when we are caring for someone (regardless of whether they "deserve" it or not,) it will be counted as serving Jesus. One day we will all stand before our maker, and we don't want to be ashamed. Instead of focusing on someone's behavior, we can focus on their needs, and the grace we've been given. Take care.
Thank you for all of your words of encouragement and advice. I have hired an elder care attorney and will see him on Tuesday. The emotions are unreal, everything from empathy to concern then from grief (realizing my mom is no longer there) from resentment to sadness. Everything is crazy.

In the morning time she pleads to not go to a nursing home then in the afternoon she is not mentally there. She already lives with us …my choice is…. do I bring her back. The nurses said that sundowners will go away but what I am seeing is a worse version of what was already there. When she is here and in a routine she seems closer to normal but grumpy and hateful.

Frankly I am tired of being yelled at and it is hurting our family life. Since she has been here everything has stopped, but at the same time I feel tremendous guilt and sadness by wanting her to stay in the nursing home. We need to sell our house and move into a smaller house we can’t do that if she lives here. And she won’t listen to me about her care.

The Dr said her bones are like paper so I am afraid she will fall again and break something else. My mother in law said that this is the opportunity to keep her in the nursing home, that if I let her come home it will be very hard to get her back there.

The emotions and guilt is enough to make you go insane and OH MY GOSH the legalities in our country. I had no idea that the state could take everything including her life insurance leaving me with nothing to burry her with. I am shocked. We work all our lives to have something and hope that our children will not feel a burden, we think we are doing the right thing and then the state comes in and takes it all away.

So really its better to never have anything. My husband and I (we are 46) are putting everything in our children’s names now because its crazy to loose it all if something happens to one of us and now I am looking at 20 more years before this happens to me. It happens to mom and her mom in their 60’s. I am staring my future right in the face and it scares me to death. Thanks for listening.

Keep the conversation going (or start a new one)

Please enter your Comment

Ask a Question

Reach thousands of elder care experts and family caregivers
Get answers in 10 minutes or less
Receive personalized caregiving advice and support