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 know the sundown syndrome is devastating but you said it came as a surprise to you after the fall. Here are some questions for the hospital, the social workers and the nursing staff.....
1. What medications does your mother take?
2. What was her baseline before the fall?
3. How long has you mom been in the hospital? Is she isolated?
4. Did your mom have any kind of anesthesia? I know from seeing my father in law experience significant sun-downing and memory impairment. The first time he had surgery it took several months for him to gain back most of his origional congitive functions. This past time he was under anesthesia for a broken hip and he's slowly gaining back what he did have. Unfortunately, we have no way of telling how much he will remember, since his dementia had progressed significantly.
Finally, music, and fidget toys help a lot. They seem to calm and stimulate thought and memories.
Good luck, keep us posted.
As for elder attorneys and estate attorneys, again a lot depends on assets. Medicare covers 20 days (the last I checked) of nursing home care if they come out of a hospital, but not if they go to the facility from home.
Not every move needs an attorney's advice, but if there are a lot of assets, it's advisable.
You all have such great advice to offer because each of you has had a different, but related, experience. You're all the best!
Carol
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For the longest time after his move to the new facility, he didn't do well. I had expected so much more, because it was a much nicer place, and his care so much better. But Dad struggled...for months. I was so disappointed, because I had such high hopes. And then I watched him suffer some seizures. That was so scary! I thought more than once we would lose him. But one day, a few months later, he did get better. And he surprised everyone, including the Nursing Staff, and has exceeded their expectations. He became ambulatory again, and more active; even social. We marveled. That was a while back. He is still doing better than during his bouts with illness, though he'll never be 100% due to his Alzheimer's Disease.
Medications can help, and other factors, as well. I've heard they lose ground with each relocation. That may be true in some respects, but it isn't necessarily always that way. My Dad is adjusting, finally, and does fairly well.
On the flip side, we have spent a lot of time in Nursing Homes over the past several years, with loved ones there, and it can be very sad to watch the other residents you come to know decline. Some decline rapidly; some slowly. Some rehabilitate, and some do not. There's no guarantees. I think it's an individual issue. We have learned to value each moment as precious.
I also understand feeling overwhelmed. We rarely anticipate illness and its effects, and are often unprepared for it. That is a helpless feeling watching a loved one suffer. It causes us heartaches. And the decisions that need to be made quickly are often beyond our understanding. I made tons of mistakes. But things smooth out eventually. Ask lots of questions, and try not to be bullied by the pressure others are applying. Tell them you'll do the best you can when you have enough information to make the right decisions.
An Elder Law Attorney will usually give you the first 45-60 minutes free. If not, go to one who will. And definitely get a second opinion. I mean, make that second opinion with another Elder Law Specialist, not just a "regular" attorney. It has to be someone well acquainted with Medicare/Medicaid, etc. I actually did everything without one, and haven't had to pay the $2,000.00 to $4,000.00 to someone else to do exactly what I did myself for $40.00, so be cautious who you trust. Some give real poor and costly advice, but there's also good ones.
Most of all, remember to also take care of you!:) SS
I did notice that music helped as well when I brought my mom home from the hospital after a lengthy stay. I feel for what you are going through.
She'll have 20 days on Medicare in the nursing home, then it will go to private pay until she spends down to Medicaid. The divorce definitely complicates this. An estate attorney or elder attorney is definitely recommended.
Carol
But back to you, crislynp. I previously made the suggestion that if you have time, you might google "guilt". It is a very hot afternoon here where I live so, instead of being outside attacking weeds, I took a few minutes to google "guilt" myself in order to save you some time. I came across an article that led me to the website livestrong.com . If you go to that website, when it comes up click on mental health. When the mental health page opens you will find a place in the upper righthand corner where you can enter a search term. Enter the word "guilt" and click on search. Two articles will come up on the first page, both titled "Handling Guilt". You might look into these and find them helpful. I hope so.
But going back to the articles that came up when I googled "guilt", the fourth article deals with the topic of guilt from a Buddhist perspective. The author is of the opinion that guilt has such a prominent place in Western culture "because of the Judeo/Christian background of our culture." The author goes on to state that "the concept of being born onto the earth with an 'original sin' easily puts a feeling of guilt in our minds."
I hope you can have some time this weekend, while your mom is in the hospital, to take a break with your husband and do something that you both enjoy. Best wishes.
Although it can seem draconian, the system is fair to the state taxpayers as a group. Its an interesting puzzle - healthcare finance.
And PLEASE do not be in a hurry to sign everything over at the age of 46 to your children . This is something that I would consider VERY carefully and is a decision that shouldn't be made in haste or when you are emotionally upset because of the situation with your mom. Things will look better once you have placed your mom in the nursing home. I'm sending love your way.
Regarding your MIL's advice, sounds like she has your best interest at heart. She may be able to guide you in finding suitable alternatives, and comfort you in making decisions. As for your Mom's thin bones, a fall could happen anywhere, and you can't prevent it at home any better than somewhere else. I think the consideration needs to answer the following: How much care does your mother require, and are you adequately equipped to provide it? If you need assistance in providing for your mother's legitimate needs, there are many alternatives to choose from. Ask a Social Worker to guide you through the process, and provide you with enough information to help you make the right decision for you and your Mom. Take care.
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.
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
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.
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.
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.