This is not a medical journal. Just a caregiver’s view. The symptoms of Alzheimer’s Disease are well-known and documented. Loss of memory, loss of functional abilities etc. etc. Too many to list. Generally speaking, unless of the ‘early-onset’ variety, true AD strikes mainly after age sixty five. There may be symptoms or warning signs before that of course.
Frontotemporal Degeneration can be identified by several unique factors, despite the fact that there are many variants of the condition. Symptoms of FTD can become apparent as early as age thirty-five. There is often no impairment of memory until quite late in the disease. The degeneration of the frontal lobe cells of the brain brings changes in all the functions associated with left-sided brain activity. Language, speech, insight, empathy, learning. Depending on which variant is present, one or more functions will decline more rapidly. In a group of five patients, each could present with different set of symptoms but all have FTD. (For a more comprehensive description of variants and symptoms, check out www.theaftd.org)
Ok, so that’s the clinical stuff. What you really want to know is this. What does it mean to you as the spouse/child/partner/friend of one afflicted by this condition – this thing called FTD?
Well, speaking from my own experience, I can tell you that everyone’s experience will be different. The devil is in the detail so to speak. My husband began with word-finding difficulties when he was fifty-four.. This prompted a visit to the neurologist to check for physical abnormalities like stroke or tumor. Someone else I know noticed strange, illogical thought processes in her forty-five year old husband. Difficulties at work. Often in the early stages, the doctors can’t even decide between Alzheimer’s or other dementia. Sometimes the line is so fine it’s indistinguishable. At first. As time goes by the differences become very obvious.
You may see completely uncharacteristic behavior – overtly sexual, socially inappropriate, repetitive behavior or a combination of all those things. Compulsive eating. Compulsive gambling. You may be astounded at characteristics never seen before that suddenly appear in your loved one. Behavior unprecedented in your life so far.
Funnily enough, once a condition has been identified, the ones closest to them can then look back over time and identify various things which were a little ‘off’ or inexplicable, going back several years. So the disease was present, just not apparent. In my husband’s case, there were signs as many as five years back from our initial consultation with a neurologist.
Even when you have a diagnosis, there is little to be done. Many people try therapies intended for other cognitive interruptions – speech therapy, medications to relieve the symptoms of Alzheimer’s Disease or depression, or anxiety. You try and control as much as you can and fend off the bastard disease with everything you can muster. But at this point in time, there is no specific treatment or cure for any kind of progressive dementia.
There is some great research work going on. It may be that we are close to a medication treatment for relief of symptoms. But the inexorable breakdown of brain cells continues.
The differences between Alzheimer’s and FTD are, as you can see, many and varied.
Because of the younger age of those afflicted by FTD, society in general is just not prepared to deal with them. Residential Care, Adult Day Care – they’re getting better at it. But your local supermarket, bank or YMCA will have a hard time forgiving your loved one for public urination or shoplifting. If he/she is forty-five years old, that behavior is unforgivable to those establishments. The disappearance of social filters and inhibitions can bring many problems.
You can carry a card explaining that your companion has a brain disorder, but the manager of the grocery store has his other customers to think of – right? Not to mention his profits.
The mothers at the park will baulk at your partner whipping it out and peeing in the bushes at random. The credit card company won’t care if your husband racks up $10,000 in internet porn bills.
Your mortgage company won’t care if your spouse decides to put your house up for sale. The lawyers won’t care if your marriage is deemed irretrievable by your husband or wife and they divorce you.
I have witnessed all these things in my peers within the FTD world. Until you become aware of a diagnosis, you may be living in a world where nothing makes sense. Your partner can do all the things that a consenting adult is legally allowed to do. Drive, watch porn, , summon prostitutes to your home, drink alcohol – whatever they choose. But when they have FTD, it’s the equivalent of giving your twelve year old all those privileges. Privilege without responsibility is a dangerous thing.
You can chastise and correct a twelve year old. They may even learn from their mistakes (hopefully!) Not so with your FTD’er. The disease helps them unlearn things and takes away the ability to change behavior.
In Alzheimer’s Disease, the person is older; seems more protected by their age and family somehow. Our expectations are different. Social propriety remains mostly intact until later in the disease process. They have already relinquished a few of those things that we take for granted. The older adult may not expect to go out to a bar, get drunk and live it up with his friends every weekend. If they still live alone, they may already rely on family or friends to help. Somehow it seems more acceptable to observe and supervise them. For your husband of thirty-five years, supervision and observation seem wrong.
There comes a point when you have to take charge. That seems wrong too. These days, the presence of Alzheimer’s Disease is an accepted part of our aging society. We anticipate that our parent may become senile and/or demented and plan accordingly. We all know someone who has a parent or grandparent with Alzheimer’s. We all hope that it won’t land on us. It comes as somewhat of a shock when it’s your partner or spouse. Someone the same age as you. The father or mother of your children.
To society at large, dementia is dementia is dementia. The person is “not right in the head”. The world (well, most of it) sympathizes but does not differentiate. They don’t understand forty year olds with cognitive loss. They don’t really want to. It makes them uncomfortable.
It makes you uncomfortable too.
Your love will be tested to the limit. Your partner may try to cut you out of their life completely. They may sell off everything you have together. They might buy six vintage cars. They may buy dogs, tools, food. They may spend money that neither of you have. They may go into your neighbor’s houses uninvited. They may not let you in their (your) house. They may bring strangers (whom they call their friends) into your house.
They may divorce you. I know one person who moved back in to take care of their spouse until they died, even after they were divorced. The FTD initiated the divorce. The unrequited love fought it with all they had.
Until you have that magic piece of paper- the General Power of Attorney – you are powerless to stop them. The POA is your ticket to controlling what happens to them – and you. Here in Arizona, there is a requirement for a separate Mental Health Power of Attorney. Even then, when you need to invoke it, you still have to have a physician attest that your loved one no longer has the capacity to make their own decisions.
Get it signed up now. Before it’s too late and you have to apply for Guardianship. That takes a long time. More time than you may have to save what is yours. And it takes money, more than you may have.
This also applies to the families of Alzheimer’s patients. However, the big difference here is that there may be a greater chance that an older person actually has their wishes documented already. People seem to think that you don’t need a will at age forty-five.
Believe me, you do.
So get one.
Also grab whatever help you are offered with both hands. Don’t let yourself be fooled by your history with your FTD’er. There’s no going back. You have loved and respected them for 20, 30, 40 years. You still do. But recognize that the behavior is not reversible. You will need a thick skin and a tough heart. To do the best for them, you may need to do some of the worst things you have ever done. You will need a sense of humor that Jay Leno would envy.
There will be funny, heartfelt moments in between the practicalities of caregiving. Eat them up.
Your seventy-five year old mother with Alzheimer’s and your fifty year old wife with FTD have very different needs, age notwithstanding.
Your wife with FTD may not know she loves you anymore. She may kick you out in a fit of rage. She has no empathy remember? The bastard disease stole it away.
She may sell off those valuable baseball cards you have been collecting for thirty years, even though she knew (before) that they are important to you. She doesn’t know what’s important anymore. Those things have fallen through the holes in her brain. It’s not that she doesn’t remember, its that the bastard disease has covered them up so she can’t see them. Buried them in the holes. She won’t care either, that you are upset, by the way.
FTD and empathy are not friends.
In FTD, significance is non-existent. Your elderly mother with Alzheimer’s just doesn’t remember.
You love them both, just in different ways. Just like the differences between their diseases.
- Frontotemporal Disease-Little-known brain disease rips apart lives of victim, loved ones (thehandiestone.typepad.com)