Thursday, February 19, 2015

We were warned

A few months after dad was diagnosed I had the opportunity to sit down with dad, mom, and a Geriatric Psychiatrist who is very knowledgeable about all things pertaining to Alzheimer's.  He talked to dad a lot about the disease and the things he was experiencing.  He asked dad a lot of questions.  And then, he turned to the three of us and said, "There are some things you need to know that will happen in the future."  We were warned that these things would happen, and we feel that it is necessary that others be prepared, as well.

First, he said that those who are diagnosed with Alzheimer's tend to end up on one, or the other end of the "behavior spectrum."  This means that patients become very docile, loving, and kind, or angry, mean, and violent.  Right before dad was diagnosed he became very anxious, nervous, and even angry at times.  After diagnosis, he was placed on medication that helped his anxiety, and he became very loving to our mom, and our family.  Then, the disease began a rapid progression, and he, once again, became very anxious, angry, and even threatened violence to my mom before he was placed in an assisted living facility where he became violent numerous times.  Even at this point, when he has become more weak, he still has violent outbursts.  He recently got in an "altercation" with another resident, and then punched one of his caregivers a few days ago.

Second, the doctor told us that he would, at some point, become paranoid and delusional.  With the paranoia and delusions, we were told that he would accuse our mom of cheating on him.   He also said that he would accuse our family of stealing his money, and his belongings.  This was very difficult to hear, especially with dad hearing these things, too.  The doctor was right.  Dad did accuse mom of cheating on him, even though she had been faithful their entire marriage.  At the point that he accused her of infidelity, they had recently celebrated their 47th wedding anniversary.  He also accused all of us kids of stealing his home and money.  None, of which, was true. Please remember that this is a disease in the brain and convincing someone with Alzheimer's of the true reality is hopeless.

Third, and lastly, with compassion, he told us that there would come a time when he would no longer know us, and would lose all ability to use the toilet, talk, walk, eat, and then his body would shut down.  He also mentioned a risk of stroke because it is common in those with Alzheimer's.  At this point, he no longer knows us, he can no longer use the toilet, he can say a few words, but cannot carry on a conversation, he paces a lot, but isn't steady on his feet, so he has fallen a few times, and was unable to walk a few days ago, but just for one day, and he can no longer feed himself; although, he can still eat.

I will add a few more warnings that we have learned during the process of this disease:

1)  Medications can be very hard (for some patients) to balance, and it can become largely experimental to figure out which medications, or combination of medications will work...and sometimes not work.  Patients are often admitted to a psychiatric hospital for a period of up to two weeks to try to find the right medications.  If possible, we highly recommend finding a hospital that has a geriatric psychiatric unit because they are equipped and knowledgeable about Alzheimer's much more than a typical psychiatric unit.

2)  This disease is very hard on the patient, but it is also very hard on the caregiver.  Get help!  Ask friends to sit with your loved one, so you can go to a support group meeting, or just go for a walk alone.  Find a facility in your area that offers "day care."  Some facilities only allow weekly care, but it is wise to know about that, as well.

3)  You may plan to keep your loved one home until the very end, but sometimes it is not possible.  There are numerous reasons that those with Alzheimer's have to be placed in a facility.  Sometimes it is for their safety...sometimes it is for the safety of the caregiver.  Even if you plan to keep your loved one home, you should still visit facilities...just in case.  It also doesn't hurt to get a name on the waiting list!  Most facilities have a waiting list, and it can be up to 2 years long.

From the very beginning, our mom was adamant about keeping dad at home until the very end.  In November of 2012, my mom was at my house, and I could tell that being the caregiver was taking a toll on her.  Dad was showing a few anger outbursts, he wasn't sleeping well, so she wasn't sleeping well, he was her shadow, always worried about being near her.  Dad had said after he was diagnosed that if he became "too difficult" that we needed to do what was best, and it would be okay.  I had a discussion with mom, and told her that if it got to a point where it was more than she could handle that we would support her decision to place dad in a facility.  Still, she was adamant that she would keep him home.

Because mom was adamant about keeping him home, we had not researched facilities, and we were completely unprepared when dad took a rapid, steep decline.  Dad was placed into a psychiatric ward to try to balance his medications, but the balance was not found, and the doctors, psychiatrist, nurse, and social worker recommended that dad move straight from the hospital to an assisted living facility.  Not only were we not prepared for the waiting lists, but we had no idea it would be even more difficult because dad was labeled a "behavior case," and many facilities were unwilling to take him.  Mom, against everyone's advice, decided to bring him back home, but he was placed back into the hospital a few weeks later, and then moved to an assisted living facility.

Just because your loved one is placed on a waiting list does not mean you have to accept the placement when you are called.  Being prepared is very important, though.

4)  Hire an Elder Care Attorney as soon as the diagnosis is received.  This is very, very important!  The attorney will help you figure out long-term care, which is crucial with this disease, especially from a monetary aspect.  You need your loved one to be a part of the process, so you need to do this while they can still make decisions with you.

5)  Be prepared for family problems.  It is very common.  Too common!  You can read my last post to learn more.

I hope these warnings will help you prepare for the future.  Even with the warnings, it is so difficult when these things come to pass.

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