- Diseases, Disorders & Conditions
Alzheimer's and Understanding your loved one
Watch out for early decline
Alzheimer's is a deceptive disease, sneaking up on your loved one before you realize it's even there. Your loved one may seem more forgetful or repeating themselves a lot. Should you chalk It up to old age or should you be more concerned?
In the early stages of Alzheimer's there might not be any outward signs that your loved one is suffering. We had just seen my grandmother on Christmas of 2010 and aside from repeating herself she seemed fine. She did share a childhood story with us that didn't really make any sense, but again we brushed it off as her being older or getting confused.
February of 2011 she was admitted to the hospital and it was evident that her condition had declined. She was having hallucinations and would become very agitated, especially during the evening and when it was getting dark out, commonly referred to as "sundowning", the onset of agitation and disorientation when it gets darker out. She had been to the doctors recently, because she was "hearing" radio stations in her head, how could they have not suspected or known she had Alzheimer's? The doctors only advice at the time was that it was psychological but didn't feel the need to further address these symptoms.
if you suspect your loved one is experiencing Alzheimer's symptoms consider a pet scan to diagnose Alzheimer's.
Would you recognize the 7 stages?
no outward symptoms
might seem like old age
very subtle changes
changes not interfering w/daily activities
noticeable memory issues, repeating themselves
cognitive functioning fails, forgets details about themselves
very moderate decline
lose track of surroundings, unable to dress
delusions present, needs help going to the bathroom
very severe decline
unable to feed themselves, difficulty swallowing
Alzheimer's world is a lonely place
Your loved one doesn't understand what's going on or why their mental state is altered. Only 45% of Alzheimer's patients are actually told they have Alzheimer's. Looking back on things, I wish we had informed my grandmother that she did indeed have Alzheimer's. She was still with it enough to understand what we were telling her and that she was in the nursing home, Did she understand why? No, she kept saying she wanted to go home and didn't need to be there. To her, everyone in the nursing home were nuts and weird, I felt bad knowing that one day she may be exhibiting some of the same behavior of the very patients she despised.
Time with family is reduced to weekend visits for a couple of hours or however often someone in your family can make the trip to the nursing home. They may feel as if they've been forgotten or if their family cared more they would just have them at home. It is not that easy, some patients require a level of care that a family member is unable to provide. Know your boundaries when it comes to caring for loved ones, sometimes the nursing homes/hospices are the best place for them, even though they might not see it that way.
Irritability goes hand and hand with Alzheimer's. As hard as it may be, don't argue with your loved one or challenge them. Instead of trying to dissect why they seem agitated know that this is just the progression of the disease.
If they've introduced you to the same person for the 5th time with no recollection of the last 4 times there is no need to scold them for this oversight. Their memory isn't working the same way anymore and they truly don't realize their lapses. Arguing with them will only make them defensive, paranoid and agitated.
If they insist something to be true just listen and try to put yourself in their situation. A recent hospital stay made me realize how my grandmother must've felt, except for the fact that I was not suffering from dementia. There will be times when they won't want you to leave and other times they'll seem as if they don't even want you there to begin with. Sometimes it is best to just walk away, go back to visit them another time and remove yourself from the situation.
Reality as they know it
The Alzheimer's roller coaster
You never can plan what to expect when someone is suffering from this disease, there will be good days and bad and you won't receive a calendar alert of an upcoming bad day. Try not to beat yourself up over rude comments they may make or their outbursts at you. This is not your loved one, this is Alzheimer's talking. Though everything remains the same to us and our outside lives, the world as your loved one knew it is gone. Replaced by their new environment, whether it be a nursing home or otherwise. The thought of the changes in their surroundings and all of the new faces can be frightening to say the least. Be sympathetic with your loved ones agitation and know that it is not directed at you.
Talk with them about your favorite memories and tell stories. Keeping them in the present as much as possible is key. There will be days when your loved one seems paranoid and may hide belongings from you or the staff, they may even accuse you of stealing from them or tampering with their medication. This is normal. Reality perception is skewed and they may have views that they wouldn't have otherwise. I've learned not to get discouraged, you can have an interaction with your loved ones that leaves you bewildered and asking what did I do wrong? Stay positive, the very next day you could have an interaction that gives you hope they'll be "normal" again somehow Unfortunately, this is the Alzheimer's roller coaster you're on.
Should they know?
Would you tell your loved one they are suffering from Alzheimer's?
As the disease progressed my grandmother lost more of her mobility and cognitive functioning. She went from being able to have a conversation to being confined to a wheelchair. Words or phrases would be blurted out, your loved ones may get stuck on one word that they just repeat over and over again. Try touching their hand and diverting their attention back to you. We found this to be helpful when my grandmother would go into one of her "yah yah yah" episodes.
Her doctor decided to stop all Alzheimer's medication, she was on Aricept, generic name Donepezil, for the past 3 and a half years and though that may delay the decline it doesn't stop it. Unfortunately, when stopping Aricept or other Alzheimer's medications it is common for the patient to progress to the stage of the disease they would've been in had they not been on this medication at all.
Within a few weeks there was a noticeable difference in her speech and mental state, it angered me that they stopped her medication. Why keep her quality of life better with the medication? They claimed it was because she was at the point in the disease where it would no longer be beneficial. It is painful to see anyone decline like this, you'll find yourself asking where did your loved one go? Can they understand what you're saying and know you're there?
Accepting the end
The last few weeks of her life she was more distant and less vocal. She would sometimes tear up when we visited and more often than not needed to sleep more. I couldn't help but think that she still knew what was going on but wasn't able to do anything about it. During our last visit where she was awake she managed to grab my hand and give it a kiss, I took that as a sign that she was appreciative we were there but also a sign that she knew she was ready to go and saying bye.
We received the call from the nursing home the next week, she was sleeping all of the time and her condition had declined, they suggested we all go up to see her that night. It was hard knowing this was it and wondering if she even knew we were there. Plans were made to meet the priest at her bedside that next morning.
My sister decided to head up to the nursing home a little early to meet us, my grandmother had passed about 10 minutes prior to her getting there. We felt terrible and anguished about not being there in her final moments. We were able to stay with her until the funeral parlor picked her up. It was extremely difficult seeing her in the deceased state but I am glad we were at least able to stay with her for that part of her journey.
I find solace in the dream I had the night before, it was a vision of my grandmother in her wheelchair but she looked like her old self. Her arm wasn't retracted anymore, she could speak and was smiling. She told me she was ready to go and didn't want anyone to worry about it, that if someone came down to get her tonight she was ok with that and was ready. I could literally hear my grandmother speaking and it felt as if I really was back in her room at the nursing home. It was the most surreal dream I had ever had but I am so glad I had it.
It is never easy to say bye to a loved one, especially when their loss is slow and drawn out, the key is being able to find peace that she was no longer suffering and being held captive by Alzheimer's.