AboutMary Gordon Expertise Several years direct experience as caregiver for family member who died of end stage AD. Did lots of research and dealt with a lot of health care professionals and caregivers over the 7 years from diagnosis to the end. Used various care options from community based resources to increasing levels of institutional. Mother of three, two born during our loved one's decline, so I know what it is to be the ham in the sandwich, taking care of the older generation and the younger at the same time and trying to balance everyone`s needs. Ask me, I`ve probably been there, done that. We made lost of mistakes and learned everything the hard way - but you don`t have to! If I can`t answer your question, I`ll steer you to a place or person who can.
Experience Currently a program manager for a large utility company. My Alzheimers experience comes from having the illness in our family. Out of necessity, we did a lot of research in order to understand the disease, plan for what might come next, and make the right decisions to help and support our loved one. Please note, I am a Canadian living in Toronto, and therefore am not the best person to ask about US regulations and insurance rules!
Question Hello: My father is turning 85 this year, and I believe he is starting to show personality changes possibly due to alzheimers (His mother had alzheimers for approx. 10 years before she died). He has always had a problem with anger management, but it is now getting completely out of control- i.e. every time me or my sister go to visit him or he comes over to our place, within a short period of time he is lashing out at us, calling us names or telling us to shut-up and arguing about every possible subject under the sun. My mother died 4 years ago, and since then it has been progressively getting worse. The problem is he denies anything is wrong. He refuses to acknowledge that his behavior is in anyway inappropriate. He has no friends to talk with him about it, and is not close to any of his siblings who are still alive, so they wouldnt say anything to him either. Physically he is healthy, and is still able to maintain the house he lives in (although we asked him to have someone come in once a month to do the hard stuff, cleaning floors etc. but he refuses to allow anyone else in the house). We finally convinced him to get a landscaping company to help with the outdoors, only after we paid for it ourselves for a year (and me and my sister work in the non-profit field, so we dont have alot of money)He is starting to forget some things, but wont acknowledge that either when we bring it up. He has saved his whole life and invested wisely, but is very suspicious of lawyers so he wont let one look at his will or finances. And he also refuses to let my older sister have access to his finances, in the case of him becoming sick and unable to care for himself. So we have that to worry about too, since neither of us are in anyway able to pay any medical bills he would require. The worst part, right now though is the anger and the lashing out he is heeping upon us. Its makes us to not even want to talk to him or deal with him anymore. We of course cant just forget about him- but what can what we possibly do about this situation? It has become impossible to be around him for any length of time. Your suggestions would be very helpful. Thankyou.
Answer Cynthia, here is a really great article for you to read that will give you some insight into what he is going through and some tips for coping http://www.alzheimer.guelph.org/downloads/12%20pt%20Understanding%20the%20Dement...
It's a long article, but a really excellent overview.
A good book to purchase (in soft cover and not expensive) is the 36 Hour Day by Mace and Rabin (4th Edition). If you only buy one dementia book, this is the one you will find yourself turning to again and again.
Loss of self control and acting out is often a symptom of the disease. He may not know why he is doing it, he may not even realize that he is doing it. He may not be able to see his own problems or deficits even when they are very clear to everyone around him. He also lacks insight and empathy into the effect his behavior has on others he is dependent on. He couldn't stop himself even if he did realize he was upsetting you.
You've already seen that reasoning doesn't work, logic doesn't work, arguing, persuading, begging, bugging, pleading - none of it works. All that happens is he gets his back up and stays angry long after he can recall what he was originally upset about. Avoid getting into confrontations and arguments with him. He has a damaged brain, and you can't win. Try to be patient, stay calm, be reassuring, and distract him. Humor him. Encourage him. Comfort, soothe, distract, divert, cajole, and get him onto some new subject or activity. We found that sometimes getting my mother in law on to some entirely new activity or thought would break the cycle. We'd get her to help fill the bird feeder, or pull out the photo album, or suggest we should all have some ice cream - anything at all to sort of pull her out of the track she'd been on and onto a new set of thoughts and feelings.
Don't take this personally. This is not him - it is the disease. As hard as it to do, you have to get to the point where you realize that this may look like your father, and it may have some of his memories and personality and mannerisms - but the person he is becoming is entirely different than who he was. All your old assumptions about his motivations have to be discarded. He is not being deliberately nasty - he is not being stubborn or annoying, or cruel or hurtful. All those things need an intact brain that can understand what it's doing, and plan out the bad behavior, with full knowledge of the impact. He can't do that any more.
He's like a toddler who lashes out when he's frustrated, frightened, tired, hungry, or overwhelmed. If a two year old who was in the middle of a kicking screaming tantrum yelled "I hate you, poo-poo head" at you, you wouldn't take it personally, because you would have the perspective of an intact adult brain. You would realize the kid has just reached the end of their coping rope, and can't help themselves - and that maybe later, after some lunch and a nap, they'll be more manageable. Your dad is no different. He is doing the best he can with a very injured brain. The flip outs are called "catastrophic reactions".
I've often thought it must be a lot like being very drunk at a large party full of strangers. Everything is becoming a confusing swirl, and he's just barely holding on by his fingernails. It takes a huge amount of mental and emotional energy to hang in even with the most basic of tasks - and its very, very stressful.
You should watch for triggers so you can avoid them. Sometimes timing activities for a time when a person is at their best helps - like first thing in the morning when they are rested and fed. Sometimes people give physical or verbal signs they are getting close to snapping. My mother in law would get very fidgety before she would lash out (she got a couple of good slaps in before I knew to watch the body language and back off if I sensed she was getting overwhelmed with getting dressed).
Are there authority figures he trusts who might be able to go over finances and wills with him - a pastor, lawyer, doctor, a neighbor?? You will definitely need powers of attorney in place for him for both medical and financial matters, or eventually, you will have to go to court to have him declared incompetent and appoint a trustee. If you want to be able to manage his affairs in his best interests, you are going to have to find a way to get the legal front attended to. Our experience with my mother in law was that she would sometimes listen to outsiders before she would listen to her son or daughter in law. We actually had very good luck with a financial planner who had helped with her taxes. For whatever reason, she trusted Janet, and didn't feel threatened or pressured by her.
Give yourself permission to be sneaky - use every tool in the book to get this figured out. Get a relative to take him out for the day so you or your sister could go through all the papers in his house so you have a good handle on his situation, from finances to insurance. You need to know where everything is and what it all means. Don't feel you have to tell him everything, or even tell him the truth. White lies, soothing, patting, reassurance - there really isn't much choice in the current situation. Sometimes it helps not to ask him for permission he can't or won't give - just get things organized so he doesn't have to think about things - probably part of his reluctance is that he can't organize himself to do anything about legal and financial stuff - if his "executive function" is damaged, he won't know where to start, so it's totally overwhelming and his best defense is to refuse to do anything. If you can find the papers, do a little research, figure out what might need doing, consult a lawyer or financial planner about what might need to be in place where you live, at least you'll have an action list. You could even arrange for a lawyer to make a home visit. Might he behave better with an outsider at the dining room table and the papers in front of him so all the work is out of his hands?
I know your dad has also been an authority figure all your life and you respect and love him, and it's very hard to become the parent to him, now that he is failing and needs help. Realize he is never going to agree with you that he needs help. He is never going to tell you you are right. He will never acknowledge that he's behaving badly. He is never going to give you permission to do whatever you have to do. Don't wait for it or expect it. The day is never coming. Can you use humor to cajole him and break the mood? Can you use his memory loss in your favor (i.e. if you have to arrange something, just tell him you talked about it last week).
If he has not been diagnosed, write a long letter detailing exactly what you are seeing and what your concerns are to the doctor and either fax or mail it. Enlist the doctor's help in getting him in for an assessment - you don't have to tell your dad the real story - you can say the doctor needs to see him for insurance purposes, or whatever will work. Go get your dad and take him to the doctors. Bribe him with the promise of a nice lunch, or whatever!! It is helpful to know what you are dealing with - and there are also medications that can slow down the progress of many dementias - you may even see some temporary improvement in his mood and cognitive abilities if he is able to get onto the right meds - which you can't do without a diagnosis. A diagnosis will also help you prepare for what is coming.
I know this is very hard - think sideways and slide around him rather than hit him head on. Hope this helps.
