When my daughter was about 2 ½ we were out for a walk one day when we happened upon a young rabbit laying alongside the road. My daughter was drawn to the rabbit but kept looking at me questioningly—she knew something wasn’t right but didn’t have the knowledge to understand. I explained that the bunny had been hit by a car and had died. She looked at me, still not really grasping the concept. I then explained that what she was looking at was the body of the bunny—the fur, bones, legs, and everything, but that because the body had been hurt very badly, the spirit part of the bunny, the part that made it hop and run and twitch its nose had to leave the body and go to be with God. She knew about God. We said prayers to Him each night.
The more I have read about the Dementias and the anecdotal reports of the moments of clarity that are reported in late stages and near or at the end of the LO’s life, the more I believe the Dementias, whatever form, attack the brain and it’s connections causing escalating confusion, frustration, dysfunction, and eventually so much damage is done that the body fails. However, their spirit is still there, until, like the rabbit, the damage is too much and they have to leave that ravaged body.
I believe we (Caregivers) win over the Dementias when we succeed in getting or LOs through this horrendous disease with love and dignity, and at the same time survive all the demands it has piled on us. Our LOs, at the end, must leave, but I believe they are still with us, in our hearts.
I came across the following poem on a card advertising a necklace. I think it expresses my thoughts well----
I Am With You Still
I give you this one thought to keep I am with you still—do not weep. I am a thousand winds that blow. I am the diamond glints on snow. I am the sunlight on ripened grain. I am the gentle autumn’s rain. When you awaken in the morning’s hush, I am the swift uplifting rush Of quiet birds in circled flight. I am the soft stars that shine at night. Do not think of me as gone--- I am with you still---in each new dawn.
To switch to spiritual lingo, which isn't my norm, I've often supposed that--in Alzheimer-type dementias--the spirit might fade out in increments, as opposed to all at once (as in the case of the bunny.) And if so, maybe the lost portion exists on the plane where the rest will join it eventually. Sort of part in this world, part not. Not that I can vouch for any other planes, or their nature, but if soul in any way remains, then part of an AD person has already made the transition.
Get your tissues handy and go to http://www.youtube.com/watch?v=o2aLSat3h0w for a beautiful vision of what the end of our LO's AD journey might entail -- like Emily I can't vouch for any other planes, but it's comforting to me to imagine that this is how it might be.
I wish this song would have been sung in rap version. It would not have been so emotional...Thanks gourdchipper...made the thought of losing my dw a bit easier.
I just finished reading “Dancing with Dementia.” The author, Christine Bryden, wants the reader to know that people living with dementia are very much still there in spirit (she was first diagnosed with AD then changed to FTD). She describes the dementia process as peeling away the layers of who she is. Her top layer is the mask that we she wears to present herself to others. It is who she is to others, her talents, her job, the way she reacts, the things she says and is expected to say - her polished, reasoned, cognitive self. Dementia first removed this layer. Underneath were her emotions. Once the outer layer was removed, dementia began to scramble her emotions. And underneath her emotional layer is her spirit, who she really is, who she is in relation to God and His creation. She believes that this layer does not leave this world until death.
It is a good book. She gives good advice to caregivers. Some is a bit Pollyanna, in that a caregiver would need to be a saint to pull off everything she suggests. But some is very useful advice about how we react to the dementia LO. The sooner we understand that the outer layer has been peeled away and adjust our expectations the better off everyone is.
She also sees some advantages to being able to live with no regard to the past or the future – living totally in the “now.” How she can thoroughly enjoy watching a deer drinking from the water’s edge, etc. Her old self would probably not have even noticed the scene. In that way her spirit has been freed from her outer layer. I know - this sounds like a very romanticized view of the disease. But she is also very honest about the unpleasant aspects of her “scrambled emotions,” and all the drugs she takes to manage the disease.
The title refers to her and her husband’s (and children’s) agreement as to how they will adjust to each new loss, collaboratively. They’ve agreed that as she feels the need for more help she will admit it, and her husband will take over or adjust in that area of her care. Likewise her husband has agreed that he will not just take over things until she asks. This is her perspective, in reality who knows… Interestingly, her husband met and married her AFTER her diagnosis with AD. She relates a very lovely story about a premonition she had concerning her husband.
I liked the book because the latter parts had a strong focus on the spiritual aspects of living with dementia.
Interesting alternative possibility, Mary. Kind of the opposite of what I was suggesting. I'd tend to give the insights of a person who could still speak from under the cloud of dementia more weight than I'd give my own, in this case.
I re-read one sentence several times in Mary's post...Christine said her husband has agreed that he will not take over things until she asks. My Husband would NEVER have asked. He insisted well into his last stages that he did not need help, (he did) ... that he could do it himself (he couldn't) and I know from reading these posts that bringing in caregiver help is very very hard if it begun late in the disease. Recall how often it is written that 'the reason button is broken', .... and they are expecting her to be mentally capable of passing the baton when she realizes she is no longer capable of caring for her own needs. ........mmmmmm???????
The Alz Assoc has a forum written by folks with AD that is well worth reading to understand what they are experiencing http://alzheimers.infopop.cc/eve/forums/a/frm/f/375102261
Carosi, how beautiful that poem is. Now I will get my tissues and watch the youtube video. Then I will call my son to see if he knows someone who can put it to rap for Phranque.
Christine Bryden is evidently a very special kind of AD patient, with so much insight into her own condition. There are some others that we have seen, but for most, I think Nancy is right. It would not be good to wait till they ask for help. My dh does, occasionally, ask for help with very pressing practical problems, but usually it's up to me to see where help is needed and try to offer it without being too obvious. Lately he has not been able to cut his food in restaurants. I need to remember to sit right beside him or at an angle (rather than across the table) so I can do it for him without being too obvious.
Nancy B, I was thinking the very same thing. Just the other night DH was saying he would go back to work if they would have him. He can not drive, can't tell time all the time, can't work with numbers, most of what his job was. Yet he thinks he could still do his job. Before the dx he could not do his job. His boss was the one to send him to the doctor. They noticed he was not himself anymore. (He would not go to the dr for me). I would worry waiting on the AD person waiting to ask for help. My DH did not know he needed help before the dx. It is all so sad, no right or wrong way go at this. What works for one may not work for another.
I have a lot of thoughts to add to this. I guess the first is that possibly with FTD, as with Christine, the patient has more memory so they remember how it was before their problems rather than a loss of this memory. Because of this, they may recognize see the differences between then and now.
My DH has been doing some minor repair work on our truck, changing a leaking oil coolant hose. Not hard work in the past but difficult for him now. He visited with me last night about how it was in the past and how it is now. He made some profound statements (profound for him) about how before he had "problems" with his head that it was easier to do this kind of work. He told me that before his head problems, he would have remembered how to do two items. Because he didn't remember, he almost removed something that he shouldn't have. This bothered him.
I am having a really hard time putting this into words, so please help me out here. DH actually told me thank you for allowing him to do this rather than taking it to the shop. He feels so good about saving me money. Our son had offered to do the work but is ill this week, so DH started it by himself.
I have more to add and will try to add it later. Please feel free to jump in and help me out here. I'm wondering how you all feel about my feelings of an FTD patient having a little more ability to recognize things than other dementia patients.
Mary, Jim had a decent memory right up until the end. He would get confused much more easily, overwhelmed by too much stimulation, etc. That was probably the most painful part of FTD is that he, for the most part, was very aware of how poorly he was doing. He also had the Motor Neuron Variant, which took away his ability to walk and gave him horrible tremors and nerve pain and eventually seized up his lungs. He clearly understood when the hospice doctor told us he thought he only had a week or two. We went outside around 1 pm, he had 90 minutes of unbelievable clarity that I wouldn't trade for anything, then he passed away that night at 11:15. It is a cruel disease. As the diagnosing dr said, the good news is that it's not Alz, the bad news is that it's not Alz. He died 14 months after being diagnosed, he probably had FTD when we met in 2003 and all the changes I saw a year or so later, and then the dx of depression and anxiety which caused him to go out on disability were all symptoms of FTD.