I experienced the loss of two of my dearest family members within the last three months. After my uncle's death, my aunt could no longer live alone so she moved into a nursing home until she died in April. I believe I mourned for her the entire time she was in the home, even though I was able to talk to her on the phone.
Those of us with FTD are supposed to not care because of the apathy that befalls us, as well as the loss of empathy and sympathy for others. Those may be true facts, but it hasn't been protecting me from the feelings of grief. I must admit that I do not care if anyone else is feeling grief and sadness, but I do feel it in myself.
I decided to do some research on the subject to find out if the reason I can not let go of the grief is possibly related to my FTD. There just is not much information about grief in those with FTD. There is a huge amount of information about grief in caregivers, but not for FTD'ers themselves.
The few articles I found on the subject tended to agree with each other. Someone with FTD suffers a lot of losses along the course of the disease. I will start with that. Two of the writers mention "Little Deaths" that FTD'ers suffer. We may lose a job that we enjoyed and had been doing for years. This may also lead to financial issues which worsen that loss. This is truly a loss for someone with FTD and something that is mourned. The other big one is losing the right to drive. This can make an FTD'er to mourn the loss of the independence they had when they could go where they wanted, when they wanted. There are many others including no longer being able to do the activities and hobbies they did before, losing the ability to read and write or even think of the words they are searching for and, a big one here, the loss of memories.
Grieving, whether from the death of a loved one, any of the events I mentioned or anything else that they view as a loss can trigger grief. They may not even realize exactly what is making them feel that way. They may become restless, irritable, display an overwhelming feeling of sadness or just seem lost.
Caregivers also feel these losses their loved one is experiencing as well as their own grief over the overwhelming task of being a caregiver, financial issues, having to do everything with no help or the loss of freedom and time for themselves. The difference is that caregivers and anyone else without dementia can understand the reality of the loss. If the grief is caused by a death, the caregiver is capable of changing the feelings of grief into memories and have the ability to understand what those feelings are connected to.
Those of us with FTD, or any other dementia, often can no longer be able to understand why they have the weight of this enormous sadness, anger or a general feeling of something being wrong. Unfortunately, even while dealing with their own grief, the caregiver needs to find even more patience within themselves to comfort their loved one.
In dealing with the loss of a person, the person with dementia should be told right away. Otherwise, they will sense that something is wrong just from being around those who already know. When telling them that someone has died, use that word. They may not understand "gone to Heaven/a better place," "left us," or even "passed away." It may help to be more attentive to the FTD'er, including more hugs or kisses. When you are discussing the person who has died, be sure to use the past tense and reminisce with them if they want to do that. Try to tell them when they are relaxed and at a time of day when they are more aware of things.
One of the issues common among the articles I found was that not telling the person with dementia is not going to be effective. They are going to sense something is wrong and become confused. If they are told a story about why the person is not around, they will recognize that what you told them does not match their reality. The other issue they agreed on was, if they are at all able, to allow the person with dementia to attend the funeral. It is believed that by being included, the reality of the situation is easier for them to understand. If they are able to attend, make sure someone is always with them to answer questions, reassure them and remove them if they become upset.
As I said, those with dementia may be grieving over things other than a person's death. These are the "Little Deaths" I mentioned before. Included are things such as loss of a job, any ability they previously had, loss of driving privileges and the independence that comes with it and the loss of memories. These little deaths can affect someone with FTD very similarly to the death of a loved one.
The FTD'er may not even realize that it is one of these things that is causing them to feel more angry, restless, aggressive or withdrawn. It could also lead to a worsening of symptoms. If these types of symptoms continues, you may have to call or schedule an appointment with their doctor. There are medications available that can help relieve some of these negative symptoms.
Even more important than medication, though, is understanding, patience and openly recognizing what is happening. The caregiver can say something like, "You seem restless/angry/sad today," "Is there something making you feel that way? Is there anything we can do to help you feel better" or "Would you like to talk about it?"
Caregivers can experience many of the same senses of loss that can lead to reacting in many of the same ways, such as anger, sadness or resentment. It is important to realize why you are feeling this way and determine if there is any way to improve those things.
I will say, again as I have in previous blogs, how important respite care can be for the caregiver. I do realize that it is so easy to talk about but not always so easy to arrange. Don't be afraid to call a family member and say "I need you to come over for the day on Saturday to stay with mom because I am not able to be here." Don't say "Could you come over some time so I can have a break. Be specific. Contact any agencies in your area to see if they offer respite services. Plus, remember that the AFTD offers respite grants to enable the caregivers to have a time of respite.
Researching this subject was good for me. Yes, I am still grieving and now realize that I will be for sometime. I also believe the sad feelings will abate eventually. Just yesterday, something exciting happened for me and my first thought was that I needed to call and tell them. Oops, can't do that anymore. Later, out of the blue, my sister said to me "You know who else would be very proud of you? Uncle xxxx and Aunt xxxx." I knew she was right and it made me feel close to them for just a few minutes. Of course, I am still grieving over not being able to follow recipes and, most definitely, not being able to drive and all those other little deaths that don't seem so little. I also know that, for now, I can cope with it all.
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