Mother just passed away from this disease after being placed in nursing home a couple months before. We know she didn't get the good care there that she was getting at home but it was becoming harder to take care of her...she had lost bathroom abilities and was having trouble walking. Medicaid had cut back hours because of "aggressiveness" which that's part of the disease! She was in good physical and we were told if she was to get sick, once she was discharged from hospital, she would be placed in a home which could be anywhere in the state... We're just having a hard time with the "shouldn't have put her there". How to get through this???

I'm very sorry for your loss. It's such a long, hard road. While it's true no one can give the kind of care you could at home, I'm sure you did the best you could. I think if you check the stages of the disease on the alz website you'll see the last stage mentions the behaviors you have listed and a couple more. Who's to say how long the stages last for any of our loved ones?
You did what you thought was best for her at the time. I'm curious what was listed as the cause of death if she was in good physical condition. How old was your Mother? A lot of folks here have said they won't list Alz. as a cause.
I'm also a little confused about the medicaid comment. Did you have in home aids paid through them?
Again, I'm so very sorry for your loss and unless you truly feel there was neglect on the part of the nursing home, I'd try to start to let it go. It sounds like you did the best you could for as long as you could. There's no healthy point in going backwards now and second-guessing yourself.
I hope you can find some peace today.

I'm so very sorry for your loss. I think a lot of us question ourselves after we lose someone we love. The should have, could have, and if only we had done more, is our human nature trying to make some sense of our loss. It only caused me more pain.

You did what you thought was best for her. Your decision was love motivated...think on this because the thought pattern you are now having sounds like it's guilt motivated which will cause you more pain. The truth is, nobody foreknows what is going to happen. We do the best we know how.

As you go through the grieving process, there will be lots of emotions that come up. None are easy to deal with. Keep posting, and those of us who are grieving will try to help you by sharing our thoughts, our hearts, and our experiences.
May God grant you strength through this difficult time.

Stephanie

In reply to Beth, Alzheimers was listed as the immediate cause of death as it should have been as that is what took her...

Its hard not to second guess everything. I have been going through it all since my father's suicide in December. I think it must be an ongoing part of greiving. You think you have it all "figured out" and then thoughts and regrets come flooding in. So sorry about your mom. Good luck with everything and I am sure you did the best you could. It is so difficult to take care of them when it gets toa certain point so try not to beat yourself up too bad. There's only so much you can do.

We found an absolutely wonderful NH that actually gave my dad back some of the dignity he had lost in an AD facility. With the help of hospice, I feel that daddy had the best of care at NH. Mother could not care for him any longer as she was 84 and he was 89. Daddy passed away on March 2 of AD only.

I am so sorry for your loss. I have had the same thoughts and feelings you are having. Regrets mostly and kind of shoving what I DID do for my mom in the background.

A friend made a remark to me that made me feel a little better. He said, "knowing your mother; if she had been taking care of someone the way you took care of her, she would have put them in a facility a lot sooner than you did." So, we do the best we can and I'm talking to myself too.

Sympathy and peace to you and your family.

I'm so sorry gbp. My father is still living, but
in a NH. I fear what you are feeling right now!!
However, I know that having Dad in my home was
overwhelming me emotionally. It hasn't been easy
with him in the NH either, but I visit every day
and check on him. He seems no less happy there
than he was here. Please don't blame yourself;
my Dad also is incontinent and was having trouble
walking before going into the NH. Likely your Mom
WAS getting decent care, and she wouldn't want
you all to blame yourselves. I believe God has our
"appointed time" and this was your Moms. Its very
obvious how much you all loved her. Take care!!

I am so sorry for you loss as well. I recently (just over 2 weeks ago) lost my Mom. She was only in the NH 90 days. I have replayed everything over & over in my mind as to the "coulda, woulda, shoulda's". I would like to share with you our journey over the past 9 months as briefly as possible, with the hopes that it may help you and others.

We made a huge move (1800 miles) from Fla to TX last year & believe me, I have played the blame game with myself over & over since the move. Some very good friends in fla. were talking to me last week, and one of them said "well I didn't know how to tell you this when you were still living 2 doors down here in Florida, but your Mom was not doing well while you were at work, and I would check on her a few times a day just to be sure she was ok". We had cameras & security systems & all installed to assist us while we were out all day, but nothing replaces a family member staying home with a loved one.

I wasn't shocked but I was a bit taken aback. I had known that I needed to quit my job to take care of my Mom, but we could not afford for me not to work & keep our home in Florida. It took both mine & my husbands income. So the solution was to get out of Florida while we could still sell the house & move somewhere that was more affordable, where my husband could transfer & where I could stay home, at least for awhile, to take care of my Mom. We ended up merging homes with my inlaws, so it's my hubby, me, MIL & FIL & my Mom (now passed away). It takes a special MIL & FIL to take in a daughter in law & her Mom with later stages dementia....I am blessed.

The care I gave my Mom was from my heart. I spent hours while she was sleeping learning all I could about this disease, how to care for one with this disease, how to notice or what to look for in silent UTI's, pocketing of meds, etc. She also had diabetes & Mitro Valve Prolapse (heart condition), Hypertension, depression & COPD from 2nd hand smoke. Guess what....the diabetes went away when I began staying home & cooking her meals & she lost 25 pounds from just eating the right foods. AND....the COPD...gone when we relocated to the dry climate! The depression got better as she was now in a household filled with people-2 her age (my inlaws) and her daughter!!! We played music during the day, games, went window shopping, got our hair done, all those fun things.

These times lasted for about 2 months & then things started to really spiral downward. she stayed up all night, wouldn't eat, spit out her meds when I wasn't looking, started talking about wanting to die, began hallucinating, etc. She had a really bad episode on Jan. 3rd, 2008 & we called paramedics & off to hospital. The medicated her & got the hallucinations under control. She got a little better, but required In Home Nursing Care & an Aid to help with hygeine & bathing, etc.

Then March 19th, she passed out, right in front of me. We couldn't get her off the floor without her screaming so we called paramedics again & off she went to hospital again, this time 6 day stay. Docs said it was potassium (probably due to not eating &/or spitting out pills) being low. Potassium was in her meds she was (supposed to be) taking. I gave her meds to her daily & nightly so I knew it was there & I thought she was swallowing them (pocketing them in her cheeks & spitting out later....).

That's when the docs said...you really need to get SNF help. You cannot do this any more at home on your own. The saying "When nothing changes, nothing changes" comes to mind in these instances. So, we knew they were right. We were blessed that an opening came available in a catholic home we'd all checked out together before she had gotten sick, so that's where she went. Most days she cried when she'd see me walk in and say let's go home or you've come to take me home. But the Nurses & the Aids all loved her (& us) so much, they'd always come & talk to her about how important it was for her to stay here & let them help take care of her. She grew to love everyone there pretty easily as did we all.

Then one day she made the remark that this is home now & I am going to die here. It was shortly after Mothers Day, but before Memorial Day, which was around the middle of May. My heart stopped. I was speechless. I just looked her in the eyes & saw tears welling up in hers, and then felt them in mine. It was unspoken language. We both knew she was right. What was there to say. No words were going to be appropriate. We sat there & cried together quietly. Now during this time, we did not know that my Moms' younger brother had died (on May 14th) very suddenly. I believe that my Mom knew her brother had died, even though we hadn't been told. Later on, a couple weeks before she passed, when I tried to tell her about her brother, she interrupted me & said "this is about my Brother...he died a while ago"....I was stunned. I said how do you know? Who told you? And she looked at me as if I were crazy & said "Well I saw him!!! He's on the other side!!". I was once again speechless. It was at that moment I knew my Mom was going to leave me soon.

I have replayed the choice to go to the SNF/NH over & over. I am convinced that the SNF did what we could no longer do at home....round the clock care, administer strong medications: sub-Q's, Sub-Linguals, Transdermals, all these meds were antipsychotic drugs that I would be hesitant at best, even if I were a trained nursing assistant, to administer on my own at home. NO WAY. Some things must be left to the professionals & in the care of a Skilled Nursing Facility. Mom was a wander risk...they had "wander guards". Mom was a fall risk...they had fall guards, merri-walkers, geri-walkers, shower chairs, etc. all to aide those who are at risk of falling.

The aides & nurses & Sisters, Priests & Brothers, all got to know my Mom & loved her deeply & dearly. They all cried when she passed, they came in a sat with us. At one time there were 20 people in her room at once...mostly staff from the SNF. The held us & hugged us & prayed with us. Everyone,including residents, showed up at her Mass yesterday at the Chapel. She has a lovely Urn & a beautiful smiling picture next to her Urn in front of the Chapel. It was beautiful. These people were involved in my Mothers life EVERY SINGLE DAY that she was there.....would that have happened in Florida? Not possible....Alz/Dementia causes isolation......she made more friends in 90 days in the SNF than she had in 4 years in our neighborhood we'd lived at in Florida!!

I'm sorry to ramble on, but we must do things that we don't really want to do, for the betterment of all. Below is the excerpt from "www.intothemist.us" a poem from the book "Into the Mist" about alzheimers. This has helped me, even though the decisions we've made really don't matter anymore now, as my Momma is gone. (Gone in flesh, not in spirit....). I hope this and my sharing of our story above helps you & others too. Know you are not alone in your grief.

"Quoted": If it is ever me with Alzheimer's disease, please protect me. I don't want to be lost. I have a terrible fear of ever being lost. Keep me safe from those who would take advantage of my confusion. Keep me fed and clean and dry. That having been said...please don't try to keep me at home any longer than you can do it without taking a toll on your lives. If this is my fate let me be in a happy place in my mind where you are my babies and I will give you hugs and kisses even if I don't call you by name.

Let me be a part of your life but don't surrender your life for mine. I want my husband to have a wife. I don't especially want to meet her, but I do want him to keep living once I no longer understand. I want to keep as much dignity as I can for as long as I can and I want those who love me to understand that if I am not myself on the outside I am still me on the inside. Bring me a puppy to cuddle, home made cookies to eat and soft blankets to cover me. Fill my room with pictures of my life so I can look at them and know I am loved.

Don't ask me about my life...tell me about my life. Feel free to leave out the times I wasn't at my best, or times that bring back painful memories (deaths of those I loved). Tell me about the good times. (from www.intothemist.us)

Take care of yourself, don't be any harder on yourself than you would on your loved one, be as easy on yourself as you would on someone who is sick...remember, this disease affects the caregivers as well. Remember that God loves us all more than we could ever love anyone or anything.