Mom is safely tucked in, short term, camping out style at the assisted living (post craniotomy or brain surgery for a blood clot due to a fall). Its been 4 weeks now, and she just got out of rehab, and I wanted her at an AL until we could assess her safety.

I don't think anyone has responded to this question, but I REALLY want to know how you folk handle 24/7 care?? Do you just not GO anywhere??? Do you go out, and depend on an Emergency Alert Button? Do you just go out when a spouse or sibling takes over? Do you hire caregivers? NO BODY CAN STAY HOME ALL THE TIME!

I just wonder if we've turned a corner with mom. We took her to the AL last Wednesday (the time was excellent, as my husband and I did have a conference to go to for church). Since then, these two "warning signs", but truthfully, I haven't even been over there to talk to the nurses. That is my mission this morning.

But she had one fall since she got there, with a bump on her cheek (I sincerely hope that isn't going to "jar" any blood vessels loose - her last bleed was about 6 weeks after the actual fall). No harm done, but a fall after being there a couple days.

Yesterday, I was only able to call her at the AL as we had just gotten in, but she had forgotten that my sister from Chicago had called her only an hour and a half earlier!

Given that fall risk and moderate short therm memory impairment, would she be safe to be back at home with me? Would I be able to leave her at all?

I sense a lot of "burn out" here on this forum lately - and I am, too. We can be honest here, right??? There is a part of me that really doesn't want to bring her back home. That feels like a real confession. Of course, part of me does!!!! I don't really want to see her live out her days there, but maybe I have over demonized assisted living places (this is a nice one).

My brother in law and I were talking lately, and he said to me how when our kids get married, we are no longer their "life." They have a spouse to love and care for, and then they have kids and they also become their "life." They still love us, but we are not their "life." We usually want to see them more, but have to understand.

He went on to say that in his humble opinion (and it was indeed humble and non forceful), that is what happens with aging parents. They are still no longer our "life." He said, "Javajunkie (ok, he didn't really call me that), your mother is no longer 'your life.' You may be HER life, but she is no longer YOUR life."

That one really has me pondering. That is what has been so hard. Caregiving forces your parent to be 'your life,' while we still have our primary 'life' to deal with - I have a husband and 15 y/o daughter.

Anyway, that was a lot of reflecting and all, but here are my actual questions:

1. If you have a parent or spouse that requires a warm body (usually yours) in the house all the time, how do you deal with that? How do you get out of the house? How do you make sure your loved one is safe?

2. How does moderate short term memory impairment effect one's ability to be safely at home alone? The fact that she didn't remember her daughter calling an hour earlier, is that a real sign of not being safe at home alone?

3. Given my sense of duty, love, compassion - hey, we're all softies here, aren't we? - how will I ever allow myself to make the decision to keep her at AL, if that is what we decide we need to do? How will I ever break it to her? The chips aren't in yet - more assessing to do. I am just naturally gun shy about getting into another series of stressful situations here at home - and reluctant to bring her back too soon. Sometimes I wish I weren't such a softie. How does someone EVER decide to put their parent in a nursing home?

Openheartinflorida - boy can I relate to "think too much."

Java,

I too must deal with the 24/7 caregiver duties. It is hard. Me and my wife have worked out a schedule at the moment, that is, while she works, I am home, and when I am in school, she is at home.

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but I REALLY want to know how you folk handle 24/7 care?

Although a loved one requires 24/7 care, it does not mean that you have to be physically present the full 24/7. Most of the time, (I have found this to be true) is that you just need to be there after dark, and be gone no more than most of the daylight hours. At least with Mom, she goes into the worst stage of her Az at sundown, (which is why I guess they call it sundowning). The second thing that she needs to know is that there is someone there when she wakes up, (even if she can't remember that you are there).

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Do you just not GO anywhere??? Do you go out, and depend on an Emergency Alert Button?

Me and my wife do go out, but usually not for more than six hours at a time. (If you have a daysitter service in your area, this is usally the max they allow anyways). We go out to eat on occassion, (who can afford that with the rising gas prices), and go shopping. Again, all this is during daylight hours when her confusion is at a minimum.

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Do you just go out when a spouse or sibling takes over? Do you hire caregivers

As I said, most of our "outtings" such as work and school are done when the other spouse can remain at home. It is far too expensive to pay for a caregiver (at least with my income) We go on a longer "vacation" when a sibling arrives and gives us a break, but that is maybe once a year.

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I have a husband and 15 y/o daughter.

Java, is your daughter responsible enough to allow you and your husband to go out??

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1. If you have a parent or spouse that requires a warm body (usually yours) in the house all the time, how do you deal with that? How do you get out of the house? How do you make sure your loved one is safe?

Look above, I think I answered my situation to help you.

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2. How does moderate short term memory impairment effect one's ability to be safely at home alone? The fact that she didn't remember her daughter calling an hour earlier, is that a real sign of not being safe at home alone?

As long as your mom is ambulatory and not a wanderer, she should be relatively safe at home. Her not remembering a call is not a sign of saftey concerns. But one word of caution, does she cook? If so, you may want to limit her doing so only while someone is home, as this can cause accidents. I would reccomend installing a shutoff switch for electric ranges, and even a shutoff for gas ranges, as gas is more dangerous with memory impairments. (these are both relatively easy to do, but please get professional help if you are not educated in the trade.)

Secondly, get rid of candle burning if you participate in this act. Candles and people with memory problems do not mix. There is a potential for danger there and with the dimenished memory capacity, it is possible that a minor accident could translate into a large disaster.

Next, if your mom is a wanderer, install double locks, that is locks that need a key from both directions. This will ensure that there is no wandering while you are not home.

Finally, limit risky behavior to times when someone is home, such as bathing, cooking, or strenuous activities. This can include some household chores.

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3. Given my sense of duty, love, compassion - hey, we're all softies here, aren't we? - how will I ever allow myself to make the decision to keep her at AL, if that is what we decide we need to do? How will I ever break it to her? The chips aren't in yet - more assessing to do. I am just naturally gun shy about getting into another series of stressful situations here at home - and reluctant to bring her back too soon. Sometimes I wish I weren't such a softie. How does someone EVER decide to put their parent in a nursing home?

Java, this is a decision that needs to be taken seriously. If you are unprepared for the commitment, DON'T DO IT!! Also, know that there may become a time whereas her needs become more than you can handle, and an institution may become necessary. Next, have a support network ready.

Love of a parent is a great quality, but to become a full-time caregiver in itself provides more responsibility and caution than some are prepared for. Also remember that the disease is unpredictable, and things can go from bad to hell in a hurry. It is also an emotional rollercoaster that you must be prepared for (YEAH RIGHT, like you can "prepare" for that ). Don't think that you do not love your mom if you cannot do it. Some people can't, either emotionally, physically, financially, or a combination of any of the three.

I wish that I could give this advice to everyone, but sometimes life throws us a curve ball. Just remember that God will give us the tools to survive.

I really hope that this advice helps you, and I know that this post is long, but it is so needed to be said. ( <-- You can tell that I am in school, geeze, look at my grammer YUCK).

The other thing is to find a support group in your area and talk to others that are in the situation already. Research how they deal with it, and how they deal with the strains that the roll caries.

Most of all, let your heart guide you. Please do not let my post make up your mind, just allow my words to help guide you to where your heart and your prayers will take you.

Remember, there is no WRONG decision here. I can see that you love your mom regardless, and she will see that too.

Oh man. These ARE tough questions and everyone's answers thus far have been so thoughtful and, well, experienced!

I ran into so many dilemmas with the being a mom/being a daughter stuff this summer while my dad was sick. Even down to: Do I leave my 13-year-old son home alone for hours or do I leave my ill father home alone? I couldn't be two places at once (son was a half-hour away from dad so picking him up would leave dad alone for at least an hour and heaven forbid I'd get stuck behind a slow driver along the way because that's all it would take to push me over the edge). There were so many frustrating times where I had to tell my son, "No, we can't do that today because we'll be at grandpa's" or "I don't know when you're going to see your friend again because we're going to be busy at grandpa's for awhile" and things like that. Luckily my son adores his grandpa and grandpa has a great house and yard, so son was a good sport. But I know it was frustrating for him at times too.

I certainly couldn't handle the 24-hour care (for reasons of ineptitude as well as stress, guilt, you name it) but we never did get outside help until the last week (and by then my dad was too much for even two people to handle).

And I never ever felt guilty about wanting caregivers or moving him to the hospice house. In my mind, it was all about getting Dad the best possible care and I knew that wasn't me (and I worked to convince my sister it wasn't her either). I threw in the towel after the first time my dad fell on my "watch." Of course, it took another six weeks until I actually got any resolution.

Does VNA have a social worker, JavaJunkie? Or does the assisted living place have someone you can talk to who is a professional? I know with my sister, it took hearing it from about eight other doctors that my dad needed more care than we could give him. Hearing it from her little sister did absolutely no good and hearing it from the first seven doctors apparently also did no good, but something clicked for her after the eighth, I guess.

What astounds me is that, even when we think we're the only person who has ever gone through any of this, there's so many other people out there who have. That's why talking to a VNA worker or someone at assisted living or a doctor or a social worker or all of the above might be helpful. Someone might say, "You know, when Betty's mom was going through this, Betty decided to ...." and Betty's solution, or some form of it, might be the exact right solution for you, too.

Or this Web site. There's a lot of experience and helpfulness here. (I should know. I'm an "experienced member.") But each person's situation is unique, just like each person is unique. And in the end, we all have to do what's right for ourselves. (Fat lot of good THAT does, eh?)

Hi JJ. I think Moms-Buddy has given you some excellent answers. My experience has been with #1 and sort of #3. When Mike had his stroke 8 years ago(wow it doesn't seem that long) he was in hospital, rehab and then extended care for a total of 10 months. (Wish I had had a computer and this place then.) Anyway I had all sorts of "advice" during that time-everything from get him into a facility and get on with your life, you know the chances of him going home and having any kind of life is not good, take one day at a time, work with what he can do. He wanted to come home so we worked on it. It was much harder for me when he was not home but that was just me. Our situation is different-there are just the 2 of us and the dog.(we are lucky if we see his daughter once a year) One of the aides at the facility had cared for her husband before he passed away and was the most helpful she said get help before he comes home don't wait till you burn out. We have Home Support-they are a govt. agency with all trained workers-you pay according to your income., we pay about $50 a day 5 days a week. They come 2 hrs. in am plus 1 pm. On Mon. I have 2 hr. respite in the afternoon and on Wed. I have 4 hrs. instead of 2 in the morning. All the workers are trained by the PT to do exercises with him. He also gets a bath once a week at one facility and a worker comes to the pool with us once a week. I have NEVER regretted having this help. We tried it 7 days after his last hospital visit but that only lasted a couple of weeks. I can't leave him alone it has become less and less. He has a partial bed rail and we now park his whch beside the bed. When he is in bed I have a baby monitor on.He still enjoys going out shopping or to lunch so that helps. I find when we go on holidays for 4 or 5 days with no help I am ready to get home. Think that caring for a parent would be different than a spouse.
just a question-would a bike helmet help protect your Mom when she falls? Hope your Mom continues to improve. I am sure you will be guided in making the right decision for all involved. Gypsy

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1. If you have a parent or spouse that requires a warm body (usually yours) in the house all the time, how do you deal with that? How do you get out of the house? How do you make sure your loved one is safe?

I am always here unless someone else is home. I schedule my "running" around the schedules of the other adult members of my family. I enjoy my solitude and have PLENTY of interesting (and uninteresting) work to do, so mostly I do not pine for running around out in "the world." When there is something I must attend, I arrange it with the other adult members of my family, then I just go.

I insure my Mom's safety the same way I did my kids - individually. Some folks are safe left with some busywork; others can't be left in their own room alone... It just depends...

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2. How does moderate short term memory impairment effect one's ability to be safely at home alone? The fact that she didn't remember her daughter calling an hour earlier, is that a real sign of not being safe at home alone?

Short term memory impairment is what causes someone to forget that they put something on the stove on "high" 10 minutes ago... Or that one walked outside to get the newspaper... Or that someone called and asked for your social security and credit card numbers...
I consider short term memory pretty important to independent living. We all have little lapses, but lapses that happen more and more frequently, coupled with a decline in judgement constitute a real hazard. Did your mom remember her daughter's call once she was reminded of the event? If she did not remember at all, even after being reminded, then I would worry more. If she just forgot, but remembered when she was reminded of the call, I would say that I resemble dat remark!!

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3. Given my sense of duty, love, compassion - hey, we're all softies here, aren't we? - how will I ever allow myself to make the decision to keep her at AL, if that is what we decide we need to do?

That's a trick question, JJ!! Only YOU know the answer to that one! I suppose you will allow yourself to make the decision when you are ready to let go of your feelings for your mom for a moment, step back from the situation and make an educated, informed, compassionate decision for ALL parties concerned. This is a very "adult" decision - sometimes adult decisions override our heart's desires. Perhaps it would help you to list all the pros and cons, then look at the list as if it had been given to you by someone else... Frequently we can see the path clearly when it's SOMEONE ELSE - but when we have to make the same decisions for ourselves, we choke at the plate...

Perhaps you are procrastinating and not letting yourself off the hook emotionally; or perhaps the jury is still out and there truly is no decision to be made at this time...

Remember that sometimes as adults, we make decisions that we just do not feel 100% about... It sounds a little like you are waiting for someone or something to make the decision for ya - and sometimes that works, but mostly it doesn't... What is the worst thing that can happen either way? That your mom might die unhappily and unmercifully of some kind of neglect or mistake, either yours or someone else's? Or just that your mom might die? Or that caring for her might ruin your life?

I can assure you that having your mom at home means more stressful home situations - how could it not? On the other hand, having someone in a facility has its share of totally inconvenient crises and stresses also... So it REALLY comes down to YOUR feelings and what YOU can juggle best...

How successfully can you care for your Mom 24/7 AND maintain your other responsibilities and relationships? If you think you can manage it on your own, go for it. If you think you will need outside help, then find it. If you think having Mom at home even with outside help will drive you batty, think twice about trying to keep her at home with you.

There's an old saying... "If Mama ain't happy, ain't NOBODY happy." YOU are the "Mama" now and if YOU are not happy with your decision, no one else will be either... Do what's best for YOU and the rest will fall into place. NO solution will feel right all the time; but there IS a solution for you if you will allow yourself to find it.