Caring for someone with FTD

If you find yourself in the situation of having to care for someone with FTD I would highly recommend the first thing you should think about is educating yourself on this disease.
Hey I guess that’s exactly what you are doing right now!

I found for myself, as a carer of my husband Chris, the very first critical step was to come to terms with the fact that behavioural symptoms, lack of empathy and an inability to follow anything complex are a part of the disease process.

Don’t take this for granted and just skim read over the previous paragraph.  Read it again, slowly and think about how do you come to terms with this in reality?

Remember that FTD is about patterns of behaviour that were not present in the person previously – it is a very definite change of behaviour and personality.

I had this amazing husband who had so many character traits that I totally admired. He always inspired me, simply by being who he was, to become a better person. Now I was watching some profound changes happening and they were not going to get better.

If you have not already read my section on FTD, please go and read that now so you have a good grounding in what it is. I hope to help you think about how to live with this and help the person you are caring for, but yourself also.  The carer has to survive the trauma of this type of care. To provide a high level of care you need to understand what is happening or you are likely to fall in an emotional heap as a result of the behaviours. Just as importantly, to survive after the caring is over, you need to be aware of what is going on and respond rather than react.

 I’m just suspecting it’s FTD

If you have been watching changes happen and are not sure what is going on, I highly recommend that you start a diary.  You can do this with a paper notebook or use your computer or phone.  Just think about a way you can record a date and some notes beside it.

When you record your notes, write as much detail as you have the time to collect. Think about noting things like:

• Anything that was happening on the day (were the people coming in, appointments to go to, something happy or stressful happening?)
• Anything that had happened the previous day (MND/ALS is incredibly fatiguing, so was the previous day particularly tiring?)
• Mood swings – did anything seem to trigger this? (don’t worry about whether you feel it was valid)
• Any behaviour or reactions that were not typical of the person they used to be
• Any instances where they did not appear to follow a conversation topic
• Any instances where they change what they say depending on who is there (at an appointment they say yes they will do something, then get home and state they won’t and did not say they would)

This list is a suggestion of how you could think about documenting to assist you to think about what you are experiencing in your own situation and what might be relevant to record.

My Chris for example would be extremely agitated whenever someone was going to arrive to assist with care in our home.  He believed I should be able to provide all of his care, as well as run my own business, look after the house and our 14-acre property.  As the time of their arrival approached he would become increasingly agitated and snap at me. On hearing the car arrive he would make exaggerated sighing sounds and frown and pout. The person would enter the room and he would smile at them and be as accommodating as possible with them, but would carefully refuse as much care from them as possible.  Mostly the duties of people coming to the home until his last few months revolved around house cleaning, meal preparation and general care like giving him meals and assisting him. All care staff thought he was a lovely positive man.  The moment they would leave he would be screaming for me and demanding urgent attention because he had refused to let the staff know he had any needs. He would then complain bitterly about the incompetence of the staff that had been here and complain that they should not be coming at all.

Now to some degree it took me a long time to see this as being part of his FTD because it seemed fairly complex behaviour and I was thinking that someone with decreased executive functions would not display complex behaviours.  But I learned as he progressed that it was part of the situation.  People with FTD can still be very cunning and manipulative.  By being polite and ‘laying low’ when people were here, he basically did not register in their minds as having any great issues. But the incredible speed with which he could switch would stun me.

A great thing about documenting is that it will help you work out whether it is FTD or whether it is part of the MND/ALS.  I understood that there were a lot of complex emotional issues Chris had to deal with such as – coping with a terminal illness, pain, progressive loss of abilities, embarrassment about his disabilities, denial, grief, depression and the list goes on.
Always remember that as a carer you are experiencing many of these emotions, even if it is on behalf of the other person and how the losses of their disease applies to you. 

Dealing with personality changes

Anger

Nearly everyone diagnosed with MND/ALS is going to experience anger as a reaction. Who would not – you have discovered that not only do you have a terminal illness and so lost your dreams for the future, but you are facing an awful decline in bodily functions as the disease progresses.
One of the differences with FTD is how the person deals with their anger, and how long it goes on.  With FTD the anger does not appear as part of grief and is not dealt with. The anger very likely started well before MND/ALS was showing itself in physical ways, and it is possible that there were a range of changes in personality and behaviour that led up to escalating anger.
Often the first signs noticed are irritability, quick frustration, frequent mood swings and then progressing to open anger and even rage.
Most often the anger is directed towards the person closest.  If you attempt to talk your loved one through whatever seems to be the cause of the anger, it usually results in more anger and paranoia towards you.
One of the hardest aspects of this is that they do not believe they are particularly angry, or they feel their anger is totally justified and that your attempt to look at and deal with the anger comes from some ulterior motive you have. Remember this person also does not know that their personality has changed. Trying to tell them it has, and to talk it through is a pointless battle. However in the early stages when you are not sure, it can be worth attempting some gentle conversations on the changes to see if they have any insight at all. Don’t push the point too far as they will remember this and it will feed the paranoia if FTD is present.

When dealing with FTD, a key to remember is that the person has impaired cognitive skills.  This means that if you attempt to embark on a complex discussion of things that have happened or things that may happen as a result, you are likely to lose them.  The person cannot follow a complex discussion and they lose the ability to connect cause and effect. As they are unable to work through a complex discussion their anger will escalate further.

A carer for someone with FTD needs to develop the skill of being able to step back from each situation and review it without the deep emotional involvement that they have in reality.  Without the ability to do this, you will be constantly hurt and in despair as you look for the ‘old person’ and wonder why they are being so hurtful.

When dealing with anger, it is best to find ways to allow the person to be angry without being drawn into the anger, and definitely without arguing back. The memory is not usually affected, so if you engage in an argument and allow yourself to become heated and say things you don’t mean, it will not be forgotten.  More than that – you will find it nearly impossible to apologise later and be believed.  The person will take anything you have said in anger to heart and hold onto it as another justification for their paranoia and lack of empathy towards you.

A person with FTD clings to their paranoia and it becomes nearly impossible to use reasoning to change their mind on something they perceive.

This is NOT EASY.  We are all human, and as a carer you have your own grief and your own high levels of stress to deal with. However, your stress and grief will only rise and intensify if you do not learn how to deal with the effects of FTD.

NEVER treat the person as though they now have some diminished intellect. Do not talk down to them, or as though they are a naughty child. Even though the person has a lowering of their cognitive ability, they are not actually stupid, and may have a high intellect in many ways.

Whilst my Chris showed a progressive deterioration of his cognitive skills, he still amazed me at times at how he could problem solve many things – what was wrong with the mower, when I last had changed a filter on the water or things like this.  He was fully aware of who everyone was, what day it was and what was going on around him. However he could suddenly rage about things that totally stunned me. 

I developed a strategy of giving him full information and letting him rage on so long as we were at home.  I did not try to argue back but would let him finish. Especially with the speech issues of bulbar symptoms his speech was very poor and it could take him a long time to get everything out. I found it was very important to let him make his point, even if I was not going to agree with him I needed to give him the courtesy of listening to him.

If we were getting into the car (about to go out, or about to come home after an appointment became a very common time for him to go into a rage) I learned to state simply that I would not drive while he yelled at me.  I could not understand his words at all when he was emotional and I could not look at him.  It was extremely stressful to attempt to drive with this happening and I would simply state to him that I would not drive like this but that I would listen when we arrived home.

This often meant he built up more anger as I drove, but it was one place that I did draw the line for my own emotional health.

Somewhere there is a fine line between letting the person express their anger and make decisions.  The ability to give and take, to compromise, diminishes. The situation becomes very difficult if a decision needs to be made and you are simply being yelled at for all kinds of things that are not solving anything.

I decided to allow Chris to make a lot of decisions that I thought were poor decisions. In my mind, it was still his life, his disease and his right to make choices in his health care. I do not regret this at all. When a situation involves a terminal illness, the key to care is to provide dignity and comfort. If the person can hold some dignity by making their own choices it may be better than trying to prolong their life by making choices for them.  With MND/ALS there is no guarantee any choice will give you more time or even better quality time.  There are very good indications they will, but no guarantee.

For example it has been shown clearly that a high calorie intake is linked to longer survival. All the experts agree on this. If the person refuses to take in enough nutrition and they are declining rapidly, will you truly be doing them a favour by constantly arguing and even forcing nutrition into them?
This is how I looked the situation – what if I spent the last months of his life constantly arguing with him, taking his choices off him, forcing him to do what I deemed right?  Would I be able to look back with satisfaction at how I cared for him in reality? I decided I would regret that deeply. No matter how hard it was to watch him constantly refuse nutrition and lose weight at an alarming weight, he was making the choice and I was honouring his wishes. Over or under eating are classic symptoms of FTD.

This does not mean that if someone has FTD you must simply bow to every single demand the person makes.  This is the fine line.  There are going to be times when you have to make a stand and only you can figure out these matters.

Another strategy that will help you as a carer is to make simple statements about boundaries you need and then stick to them. Your needs and reasons may well be misinterpreted, but you do have genuine needs.

One of my strategies to cope was that when Chris was either in anger that would cause long outbursts, or sullen long silences (they could go for hours and even days) then I would take my own breaks separately from him. I insisted to myself that I would always complete his care with a loving hand, take my time to do every task well and respectfully, and speak kindly to him during his care. But at these times, once his care was done, I would make my own cuppa and go and sit in a quiet pleasant place on my own.  I would enjoy the quiet and a nice view, or maybe do a puzzle (I love Sudoku), or listen to some music.  Just a 15-minute break to recharge.
Before I began this strategy I found that it would distress me that I would spend an hour or two completing his personal care, slowly and with love.  He would refuse to make eye contact the entire time.  Then I would sit down with him to have a break and he would make a great point of refusing any eye contact or interacting with me in any way. As a carer, the person you care for becomes your world. So it would drain and dismay me to allow him to treat me this way during a quick recharging break.

Be very careful that you are not using any strategy as a punishment. I made it very clear when he was behaving this way I needed to take some quiet time to myself and would be nearby if he needed me. I always ensured all his personal care was completed first.

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Loss of empathy

This is a really difficult to live with daily. Carers are pouring out an enormous amount of physical and emotional energy to care for someone. Sometimes just a little in return can give an enormous boost, and similarly just a little not given can cause a carer to feel like they cannot make it through the day.

When dealing with FTD you will have to develop some resilience and find support from other people.  This can feel so hard if caring for someone who used to offer you a lot of support and love.
Always show concern for any issues or problems they raise and be prepared to listen patiently. Be prepared that you may have to listen to the same or similar issues many times, as they do not resolve issues but carry them and often their anger or frustration only escalates over time.

Try to establish a routine where possible. Be prepared to keep it flexible to some degree, but people with FTD do not cope well with spontaneity, being rushed, too much stimulation or being pushed into something.
The same routine is simply not possible every single day, but if you can build routines around some things it will make the person feel more in control. Discuss the routines together and attempt to make routines match their wishes as much as possible. It can be very difficult if a routine cannot match their wishes and they believe you simply do not want to meet their needs.

The building of routines that will work for you both are important as you cannot complain about your own exhaustion, frustrations, self-confidence issues or time constraints to someone with FTD as they lack empathy. They will turn each one around towards their paranoia.

For example if I expressed that I found it difficult to do every single item of personal care as Chris progressed and his care took more and more hours every day, he would immediately accuse me that he knew that I had never wanted to do any of his care.

So I had to become resourceful in organising what I would do and what care staff would do. Often health professionals or the care staff would suggest to him that they wanted to put some changes in place so that it was not coming from me. This was not fool proof, his paranoia and lack of empathy remained, but it helped instigate changes with fewer traumas. When FTD is associated with MND/ALS we have to instigate changes as their physical condition deteriorates and the hours and complexity of care needs rise, so we cannot just put a routine in place and have that work for years.

Each serious decline in Chris’s physical condition sparked anger and resentment towards me. He would insist that he was not a high care patient (it took around eight hours per day just to complete his personal care needs) because he was not bedridden. He would say things like – I only want you do this one thing for me! Whatever that one thing was, he was ignoring all the other things that totalled his care up to eight hours, as he would not have considered replacing something else I did for him for this one he wanted.

If you allow yourself to be drawn into heated discussions on what your needs are, it will fuel their anger and paranoia. This does not mean you can never state your own needs to someone with FTD. It means you want to avoid being pulled into arguments, and you want to plan what your needs are and know what you should stand your ground on.

I have seen too many times carers arguing and fighting with someone with FTD nearly every day. This is terribly draining for your energy levels as a carer and is emotionally crippling. You cannot win any arguments with some with FTD. If you can understand this, half your own internal battles are won. If you spend energy trying to find ways to convince the person of this or that need you will be constantly dismayed that the whole thing went awry.

Seeking help from a counsellor with good experience in behavioural issues would give you someone outside the situation that could help you to think about what you need to stand on, and how to let go of other things so that you survive caring for someone who does not appear to care at all about what is happening to you.

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Safety

The poor judgement, lack of insight and inhibition, combined with the physical progression of MND/ALS create a seriously unsafe situation.
The person believes they have everything under their control and can make safe decisions. This may revolve around their ability to eat, walk, use equipment and drive.

Telling the person you have observed that they are unsafe in a situation results in immediate anger or rage.

When the safety of others in connected as in driving a car, you may have to take measures and their control of this from them. Involving health professionals is very wise in this situation, as you need the back up of their assessment of the situation. They may still blame you for being unreasonable in taking something away from them.

My Chris had two serious falls that resulted in injuries including ruptured shoulder tendon, head injuries, broken bones and large soft tissue injuries (softball sized swellings). He continued to believe that he was safe to walk unaided. He was terrified of being in a hospital as they could not understand his speech and did not understand his care needs, yet he could not connect that staying safe would keep him out of hospital.

If I told him that I feared him dying in a pool of blood and pain on the floor in front of me, he would reply that he was going to die anyway. He would then accuse me that I wanted to put him in a corner so his legs would rot as I wanted him to rot and die faster.

One of the most incredible things I witnessed was a time that we had my brother staying with us after surgery for a giant carotid artery aneurysm. He was nearly blind, and he was unsteady and frail. Chris observed to me one day that Paul should not be allowed to walk around the house unaided as he could fall and injure himself. I was stunned that he had enough insight to see that my brother was unsafe, and yet he would rage if anyone suggested he was unsafe. I’m afraid I began to laugh as I saw the paradox and he became very angry at me and said – you are not going to do anything about this are you! I asked him if I should put my brother in a corner and tell him he must sit there until his legs rotted. He honestly could not see the parallel between his situation and my brothers.

He then went on to suggest that because Paul could not hold his head up well he should be wearing his neck brace. Again I was stunned. The neck brace had been discarded for a couple of months, and Chris had a lot of trouble holding his own head up. He did not like the brace after trying it once. I had tried to convince him that it would take a little time to get used to the brace and he should wear it for just ten minutes each day for a week to learn to adjust to it but he would not accept trying it. Now as he observed my brother, he could see how the brace would assist him, but still could not see that it would do anything for his situation.

This is such classic FTD. It was simple for him to observe something in my brother and offer a solution. It was complex for him to comprehend what was happening to himself and agree to follow anything through.

Even though his doctor signed a medical certificate of incompetence to drive, Chris always believed and told people that I took his licence off him.

Acceptance of what FTD means, is going to be the most important armour you can put on. You cannot bring back the person they were. You can trigger many of their symptoms however. Learning about FTD and how to prevent uselessly triggering rage, paranoia and determination to take risks will help you give a high level of care with the least emotional scarring for you as a result.

This is not to put any blame on the caregiver, but managing FTD is a new skill to learn.

References and recommended further reading:

1. http://memory.ucsf.edu/ftd/livingwithftd/practicaltips
2. https://deborahthelwell.wordpress.com/
3. http://ftdcaregiving.org/documents/ProgressionFTD_CaregivingPerspective.pdf
4. http://ecdc.org.au/

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