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Alzheimer's Disease
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Posted 8/8/2013 7:53 PM (GMT 0)
This is sort of extension of my post "My Mom hates the nursing home".

For all that replied there, Thanks so much for your advice/recommendations.

I thought I would start a new one, as it was getting long and winding.

To recap, I'm very unsatisfied with the nursing home my Mom is currently in. I think that she would benefit from a more social environment, so I've made appointments at two local retirement living homes. The first one was extremely impressive. Top notch 5 star everything. Unfortunately, in the end, it was just too independant for my Mom, who's dimentia is too advanced. It bothered me that they didn't seem to care whether she was a good fit or not, they just wanted her in there, and have called me about a half dozen times.

Enter the second home. Not as fancy and new, but I was very impressed with what I saw. The assisted living package is an additonal $500 a month, but it will give her all the assistance with personal care, and getting around that she'll need. There's a big emphasis on activity there.

I will need to get my two brothers on board with exploring this option further. I certainly hope it's a good fit for her. It's hard for me to make a quick decision, as I'm not exactly impartial, and I do find myself thinking with my heart at times. We'll see what happens.

Posted 8/8/2013 8:37 PM (GMT 0)
Praying for the right doors to open for your mom and that she will be well taken care of!!!
Posted 8/9/2013 2:46 PM (GMT 0)
Hello 73monte:

   It sounds like you've pretty much made the decision - and are waiting for the input from your brothers. This is so hard ... hope all three of you come to the same conclusion so there are no doubts later.

Best wishes to you.

Posted 8/9/2013 7:09 PM (GMT 0)
I don't recall how old your mother is.

In Canada I don't know what portion, if any, that the government will pay for her care.
I do remember mention of the fact that your two brothers are not much help.

Say the fee is $5,000 or more each month.

If she is advanced in age and doesn't want to be in a institution, why not keep her either in her home with you and others taking turns, or one person full time, or taking her into your home.

In return, the full $5,000 or more goes to the person or persons who take on that duty.
In most cases that frees up about $4,000 of that $5,000 that would be spent and that $4,000 is or can be tax free. Equal to perhaps $6,000 taxable earned income. More than most people make on their job.

The costs are seldom more than that found in a institution and the patient/parent is usually happier.
Either in their own home or that of a family member.

Lots of seniors don't like "activities" and all that socializing. With dementia and Alzheimers it can often add to the confusion and anxiety.
They also like to add a little something when the patients don't fit in. Sedatives and things to calm agitation. More when needed.
Care, even in the best places is sketchy. There are only so many attendants per person and those with the most trouble get most of the attention.

They all sound good before entering. They all have smooth sales presentations that make it out to sound much better than staying at home. Yet it seldom is.

One needs to make unannounced visits, just walking in, to day rooms and the dinning facilities.

Long ago I would go into dozens of these places in the course of supplying cleaning chemicals and detergents. about 40 years ago.
The activities are as much for the families to see as for the patients to actually enjoy.
Look at those patients who are not in the activities. That would be most patients. Either in their room or in the halls, alone.

Each place is different, but we often focus on those few who both enjoy and join into the "activities".
Personally I wouldn't want to have anything to do with the activities.
I knew my father wouldn't join in, no matter how well they were done.

Unless a parent is someone who enjoyed such activities throughout their life, then it is highly unlikely they are going to start enjoying such when they have dementia or Alzheimers.

Sorry if I'm not so upbeat or looking on the bright side, but having seen and visited these places I don't see much happiness. More like holding cells that are made "safe" from falls.


Everyone should ask themselves if they'd like to stay there and join in with these activities.
Eat in these dining rooms. Stay 20 hours a day in their room.

Now, there is a big difference for those who actively seek out such living in assisted living where most of the people are still sharp. Whose main limitations are physical.
But in those where mental decline is the chief cause, I wouldn't want to end up there.

Just because people can't think well, doesn't mean they don't know things are wrong and unpleasant.

If there is money for a $5,000 a month facility and there is also money in perhaps a house, then there are assets to keep a person out of a facility, but all family members have to agree to free up the assets.
Perhaps even more than the $5,000 if the extra thousand or so creates a substantially better quality of life and comports with the desires of the patient.

Lots of families don't have resources, but they often have human resources.
Even less desirable physical surroundings can be superior to institutions when the people doing the care are caring and can help I a personal way. People who know the person and their past.
Who can relate to the small amounts of memory that remain.

I realize every situation is different and everyone's financial ability is not unlimited.
But human help is more important than fancy buildings and such.

Seniors like to stay at home, or at least around people they know.
That is the way it has been for thousands of years.
Posted 8/9/2013 10:39 PM (GMT 0)
To 73monte:

   The last thing I would want to do is to add confusion to your decision. But, my Mom is in a Home for Assisted Living for Dementia and Parkinsons patients. It is a very specific need home - and not a nursing home. The care-givers are trained for those two diseases. They know what they're doing ... and they have an RN on staff at all times. It's not just a place for activities. The patients are strongly encouraged not to stay or hibernate in their room for a reason ... cause dementia gets worse that way!!!

   I have no siblings, so my decision didn't need to either be popular or money motivated. I love my Mother and want what's best for her. And as far as I'm concerned, I'de rather see her lifetime savings make her as comfortable as possible with the proper care as long as it can - than think about how much is left for an inheritance! After all, it was her money.

   It is a very difficult decision ... weigh all things in your own best judgement ... and never feel any guilt about your decison.

Follow your heart ..........

Posted 8/10/2013 2:31 AM (GMT 0)
I realize I was presenting the other side of the picture without trying to make the decision easier.

Each case is different. Each dementia or Alzheimers individual is ...well, a individual.
Each family's financial situation is different.
Often times the burden is not shared between all the siblings, especially when there is only one daughter.
Clearly we'd all wish all our parents would age well and then die peacefully in their sleep without ever having a difficult period.

I guess I'm just inclined to make the case for families doing more, even when it causes disruptions and hardship.

I did it for several years, almost 7. I'm not sure I'd do it again but at the time, there was no particular point I could stop and put my father where I knew he would be in such mental turmoil.
I got the house for my deeds but the process fell right in the middle of my working life and when you add it all up it was no gift. We would have easily have spent the value of the house for care, and the individual wouldn't have been nearly as comfortable or as well attended to.

Still, it was total disruption of one's life. Everything else is neglected. Especially ones social life.
I have still not recovered from that.

Ideally there are other siblings who give some respite. I got about 3 hours a week, which only allowed one to rush about buying all the items needed to make it through the following week.
Hardly a break.

So I don't want to make it out to be a picnic. Its a chunk out of one's life.
Too bad we don't live in villages any more. Where families are all around us, sharing the common duties.

All I would say is that if one can do it and decides to do it, that the other siblings should expect there to be a fair trade off in value of services rendered as well as understanding the added value of the quality of life that the parent gets.
Some times they feel that someone helping at home shouldn't cost them as much as a institution would cost. In fact the care at home is worth even more if it gives the parent a superior level of care.
Don't want to overly focus on the monetary matters but too often the sibling who does the care is expected to be some kind of martyr, where as others are quite willing to pay a institution whatever they ask.

I would add, that I wasn't married. That situation can completely alter the decision for many as their spouse has to be considered in the decision.
Not a easy choice. That is for sure and it depends on so many things such the age of the parent.
Life expectancy. The path at the end is predictable in Alzheimers.

I would add one final thing. If the patient is heading further into Alzheimers do only the minimum in medical care, aside from comfort, and make sure you have medical care power of attorney for those decisions.
A close friend of mine who had placed his father in a institution was so angry when his doctor gave him a pacemaker. At the time his father was already well into Alzheimers, but my friend hadn't gotten medical power of attorney.
He ended up comatose and in a completely rigid state for his last year or so. But his heart kept beating like clockwork as the nursing home kept getting $5000 or $6000 a month (back then).

Do the best you can for both you and your mother under your own very particular circumstances.
Posted 8/10/2013 4:03 AM (GMT 0)
I agree with SO much of what Franklen wrote. My mom has Alzheimer's, diagnosed 10 years' ago. Lived with me for one year and it nearly destroyed my marriage and my physical and mental health. And, I had a caregiver here because I worked full time, but my office was in the home and my mother refused any help from the caregiver and insisted I take care of her, which I wasn't able to do during working hours. It was constant stress, CONSTANTLY. When the caregiver left, I cared for mom, from about 4pm until she went to bed at 9PM. Then my husband would come home and he would want time with me, but wasn't able to because I was tending to mom. As I said, it nearly killed me. Mom went on to live with my sister, then into assisted living and now in skilled nursing, awaiting public aid. She is completely out of funds. Fortunately, I have her in a facility that is 5 star, highest rating in this area, all private rooms and they accept that she is public aid pending and they are only taking her social security check for now. Franklen perfectly described what the Alzheimer's/dementia floor is like. Yes, the staff is specially trained to work with AD/dementia patients, but patients have rights. So if someone refuses to shower, they do not push it. My mother went SIX weeks without a shower. Believe me, I was there, I visit her often, I was going every week day, but now have cut down to two days a week and my sisters go on the weekends. I tried everything to get her to shower. Thankfully, they are able to get her to wash up at the sink in the morning. She goes through periods of refusing to eat, and then refusing to take meds. I believe she does this because she doesn't want to lose control, that is the only thing she has control over, if she showers, or eats or takes medications. I know, for her own well being and safety, she cannot be in our homes. She falls constantly because she refuses to use a walker in her room. Her bed now has an alarm, so staff knows when she gets up to use the bathroom so they run there and walk her to the toilet. Thankfully she has not broken anything. I feel as if she is going through hell and she is taking me with. I am NOT blaming her. It's just so difficult to watch her on this journey. I see a psychotherapist and a psychiatrist for depression and anxiety and take medications. I find myself looking at her and thinking how sad this is, what she has become. She is so insecure, she does not leave her room except to go eat. There are many activities, none of which she will go to. She stays in her room, all day long. I beg her to let me take her outside to a beautiful courtyard, take her by wheelchair...no. Take her out for coffee, for lunch, for dinner, buy her something...no. All she wants to do is stay in her room and yet she calls me at least four times a day to tell me how lonely she is and asks "when are you coming?" when I was just there an hour before. Believe me, I know it is the disease, but it is still so hard to deal with, to wrap your head around it all.

Well, I really went off on a vent here....

Miriam

Posted 8/21/2013 9:00 PM (GMT 0)

Miriam,

You're making feel guilty for even posting here. What I've complained about going through with my Mom is nothing compared to what you've done.

You're a saint for taking your Mom in for a year and sacrificing your whole life in the process.

It sounds like you've done everything humanly possible to give your Mom the best quality of life considering the disease she has.

I hope in time that your Mom will mellow, and become more receptive to her surroundings.

My Mom was extremely unco-operative, crying, wanting me to get her out of the nursing home for the first 2 months that she was there. She doesn't love there now by any means, but she has adapted somewhat. I hope things improve for you as well.

Posted 9/3/2013 3:17 PM (GMT 0)
To 73monte .....

   I hope your Mom is feeling a little more comfortable now in her surroundings. It does take some time.

   The last time I saw mine, two days ago, she was in and out of napping. She was sitting in the great room along with 10 or 12 others ... the TV was on a music of the 50's channel for the first hour and not many people were paying attnetion to it ... a lot of napping going on at 1pm to 2pm.

   Then one of the caregivers changed the channel to Lifetime for the next hour ... but there was little change in how interested everyone was. I think ....... the residents had gotten so used to the level of activities that normally are being done daily, the lack of activities was putting everyone to sleep.

   My only point is ... we humans can get used to nearly anything - even if it's very difficult in the beginning. I do believe that activity of some sort is invaluable to someone suffering from dementia.

   Prior to that, the last two times I was over, the weather was really nice, so Mom and I spent our time together outside. And funny enough, her stories were all about ficticious things that were happening to where she thought she used to live. In reality, I realized she was talking about the place she is in - and has been in for over 11-months now.

   It is sad that her memories of her own home are gone ... but that's the disease of dementia. What has replaced those memories are things that she thinks happened where she now lives. She thinks they were years ago, but ... if they ever happened, it was months ago.

   Please try not to feel any guilt for trying to do the very best for your Mom that you can do.

Peace and hapiness

 

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