Hello all. I have been doing a lot of reading around the site and can feel for all of you. Although I cannot relate to having a spouse, my grandmother has Alzheimers/dementia. My grandmother has slowly been losing her memory and asks the same questions in a continuous loop. It is hard on the family because she technically has to be "babysat" at most times, but we are doing everything we can to make her comfortable and help her remember things.
I am a senior in college and for one of my final projects I am working with a client that revolves around memory loss. It is my assignment to get some feedback from people that are actually dealing with Alzheimers/dementia. If you could please help me, your responses will be greatly appreciated :)
In what ways, have you tried to help preserve the memories of your loved one that has Alzhemiers/dementia?
Hi Rudy, congratulations on focusing on the needs of people with Alzheimers and dementia, particularly educating young people about this horrible disease.
As you know, this is a site for people who are caregiving for their spouses with dementia. You may also want to post your question on the Alzheimers organization's message board general forum or caregivers forum...you may get more responses if you post it there. Good luck with your project.
Thank you for your quick response, LFL - I will take your recommendation into consideration. At the same time, I am still interested in the spouse's perspectives and how they go about helping their spouse remember things.
I do not do much to keep memories alive, at least not right now. At first I would tell him what he forgot, but that was a never ending process which wore me out. I do have little photo albums around for him to look at. He use to look at them often but now he does not even pick them up. I think for him it is too painful not remembering. He is probably moderate stage - diagnosed in 2008 at age 59.
If you on Facebook there is a group called Memory People which as people that have dementia and those caring for them. Another group is called Forget Me Not.
Rudy, My DH (Dear Husband) passed in Dec. He was 58 at dx and passed less than 4 years later. I spent very little time on helping him remember. I spent most of my time making it possible for my DH to have the safest and happiest time that I could. We took it day by day. The decline was rapid and really had very little time to worry about remembering. DH very early on forgot who I was or who his children were. His youngest daughter was 14 at the time at his dx. That is our story. Good luck with your project.
Rudy, your focusing on "memories" suggests that you may be under the common misapprehension that Alzheimer's is mostly about not remembering things. In actuality, losing memories is a relatively trivial loss in comparison with loss of executive functions that relate to reasoning, planning, organizing, orientation, and activities of daily living such as toileting, dressing, and even eating.
But back to your question, as Ronald Reagan was slipping away into Alzheimer's land, his wife Nancy said something to the effect that as marriage partners get older, shared memories are about all they have left, and it becomes a very lonely time when the other spouse no longer remembers. But unless you're wealthy enough to afford more help than most of us, you probably find yourself so fully occupied with just doing stuff that HAS to be done that there's little time left over for memory games. And it was my experience that my spouse lived in the moment anyhow -- the things going on around her or within her immediate field of view were pretty much her world. Sure, we played a few memory games, like my asking her to name the different flowers we passed each day on our walks, but far more important from my perspective was trying to keep her "engaged" in hobby activities that she seemed to enjoy, and activities that put her in contact with other people on something of a "normal" basis. As she had to give up driving, my son was good about taking her to Sunday school, which was something familiar that she'd done all her life. And as she had to give up golf, which had been a passion, I encouraged interest in other hobby activities that we could do together. But one accomplishment never left her, even in the later stages of the disease, and that was love of music and the ability to provide vocal harmony with any song she heard, so she became a regular fixture at Sunday afternoon bluegrass jams, where the other musicians accepted her as an almost equal, and some of her singing buddies later sang favorite hymns at her memorial service.
Well, I guess I got sort of off your subject of "memories" there, but I think in many cases it would be better to accept that the AD victim's universe is mostly the present moment, and to try to live in that moment with him/her and encourage things that he/she is capable of doing and enjoys.
"In what ways, have you tried to help preserve the memories of your loved one that has Alzhemiers/dementia?" We didn't. I can't add to the wisdom of the answers you've received from everyone above. We lived in the present with them. That's where they were.
In simple layman's terms, Rudy, you cannot preserve memories of your loved one with AD and many other brain diseases. Brain cells are dying, that's the disease, there is, so far, no way to stop that from happening. As the cells die, the memories die with them. They cannot be recalled because they no longer exist. The symptoms you describe are classic. She asks the same questions because she instantly forgets that she asked. Try to divert her with other activities, a treat--ice cream, a walk, TV, whatever. Yes, she needs 24/7 watching, 'babysat' because she forgets how to dress, bathe, toilet, eat, even swallow. Left alone can be dangerous, just like with a toddler. We all wish we had better advice, but from here, the best thing is to take turns being with and caring for her, it'll become too much for one person alone; do not argue or try to get her to 'remember' what is no longer there, just work with the memory she still has--photos, songs, family visits, inasmuch as possible, give her lots of love and keep her life as calm and familiar as possible. You are a dear man to care.
As I read all our post it dawned on me: when it is our spouse we do not concentrated on memories, maybe because we don't have the energy. From my time on the Facebook groups,kids seem to be more concerned about trying to get them to remember. As Bettyhere said, the memories are gone. When we see grandchildren, 15 minutes or less and he forgets we were there. This is a horrible disease. :-(
My husband always knew his family and close friends. He knew his favorite football team's name. But he didn't remember the house we had lived in over 26 years and thought when I had some trees removed that the people who owned the house were going to be upset. So it isn't just memory loss it was loss of reasoning in his case. Thank you for researching this. I have found unless you've lived it - it's hard to understand.
If you mean "how do you help the spouse with Alz preserve his/her memories?" then the answer is that you cannot. You must accept that their mind is going into territories where you can only accompany them as a pleasant presence, living in whatever their present moment is.
If the question is "how can you preserve memories of the person with Alz for his/her loved ones?" then there are plenty of ways. My children are all in their 20s now, but were young adolescents when their dad began to disappear into the disease. One thing I did was assemble a thick photo album, showing all phases of his life, from infancy on, so they could look and remember what a vital person he was, how involved he was throughout their childhoods, and what some of his accomplishments were.
It is impossible to "preserve the memories" and no one has worked harder at it than the spouses. Alzheimer's is a progressive brain disease that will eventually result in death. You might want to rethink the precise topic of your thesis from "how do you preserve the memories" to something along the lines of "how do care givers cope with the loss of memories in a compassionate way." Many of us noted during the early stages of the disease that the patient would forget that a dear family member had died. When reminded that his mother had died, he would grieve all over again, as if it were a new death. It was and is a heart wrenching situation to watch. This could, and did in cases, go on day after day. The compassionate way of dealing with this situation is to divert the patient's attention by "let's go sweep the porch," or "your mother will probably be calling sometime later" or "Oh, she called earlier and I told her you were fine." The patient will be reassured for the moment and forget that mother was supposed to call later; you have spared them the grief of experiencing the death of a loved one yet again.
I think that sometimes there are what I would call "false" memories. D. & I were with his brother-in-law just last evening. His BIL told a little story about something that happened in his life. In just a few minutes, the "memory" somehow became my husband's memory. He seemed very definite that he remembered this happening to him (which it didn't). Repeated the story with himself being the main character, so to speak. He's about the middle stage, has very little, if any short term memory, but can still remember people & names - can't remember his age, though.
Rudy, Please let us know if our information was helpful. I know you wanted to know how to "help preserve the memories of your loved one that has Alzhemiers/dementia?" I think you found out that, that just can not be done. Sorry.
Once it is lost, it is gone. The brain is dying. As was stated above.
All of this information is very helpful, thank you for taking the time to reply to me. I understand that it is pretty much impossible to preserve the memories of a loved one that has Alzheimers/dementia.
Has anyone ever considered using technology to record their (or their spouses) life/memories before they actually begin to lose all of their memory? In other words, consideration of recording memories in a database or some sort of technology could help preserve those memories to pass on to future grandchildren or great grandchildren etc. Is this something that would ever be considered in your situations?
We don't need dementia to explore that question and the premise is that we would be recording the memories before dementia to get the true memories so it's not a question about the state of dementia but the recording of memories for anyone.
In that context we can ask ourselves how much would some preserved memories of your own great grandparent be? Don't forget you have eight of them. If you had gone to great great grandparents there would be sixteen of them and so on.
All people lose all memories and only those interested in history or the past place value on them. Most people have no idea what their great grandmother on their father's side thought and frankly spend no time on such thinking.
I suggest you consider such a baseline where the value of preservation of memories is univeral and that it is watching the loss of memory and identity in loved ones which is poignant here.
Rudy as I see it you have fallen into a common misunderstanding of the complexities of the underlying AD relationship.
Most AD relationships are Parent-Child (albeit grown children). Grandparent-grandchild is also very common but since AD occurs with advanced age, the relationship (before AD) can never be as lengthy or as deep with a parent-child relationship. In both these two relationships there always exists a long period of time that would be unknown to the younger member. ("Mom what was it like when you were a child?" "Grandfather tell me about when you were growing up")
THESE are the memories that stereotypical Alzheimer's advice givers talk about preserving. If you dont collect them now they will very quickly be gone forever.
We are Alzheimer SPOUSES. Generally we are the same age as the person with Alzheimer's Disease. We have all been married for many years. Our memories are SHARED with our spouses. We all have 20, 40, 50+ years of shared memories and there is nothing we dont know about our spouses.
We hoped to be able to SHARE those memories with our spouse as we participate in the golden years of our lives, but sadly they are being stolen by a disease. This is the special hell that AD spouses endure that those involved in a Grand/parent-grand/child relationship will never fully understand.
Those memories (OUR memories) have not vanished from OUR MINDS. We still remember! We dont need to preserve "our memories" they will be there until our death.
Yes, our memories need to be preserved for our children and grandchildren, but the love we shared with our spouse (over our entire marriage) is not something we need to be reminded of. We will always remember.
Rudy, every family who has a relative suffering from dementia tries to have the dementia patient recognize their life before dementia through photos, films, songs, etc. They may or may not remember and there's nothing that can be done about it.
I'll give you a personal example, I recently found a photo of my husband's parents (probably about 1 year before we married...about 1982). He seemed to know they were people in his life but couldn't identify them. He just didn't know. BTW, he's 63, not 83 or 93.
We have no children, but if you search the files on this blog, many spouses have recorded memories (pictures, video, etc) to preserve the legacy of their spouse for themselves, children and family. But at the end of the day, the person with dementia just doesn't know. We all want to preserve the memory of the person we fell in love with and shared our lives with and we do it in many different ways...pictures, cards on special occasions or for no reason, etc. But if you have no idea that your spouse will have dementia in the future, how do you plan for that? You just do the normal family things. When you find out, you take more pictures (or videos) you cherish the cards, letters your spouse sends, you keep the plane tickets/ticket stubs, whatever is important to you so you, the spouse can remember the love. It is not something you can plan for. And at the end of the day, your spouse, mother, father, grandmother, whoever will not remember. You have to remember for yourself and your loved one. You hold your loved one in your heart; and you come to terms they will never know who you were.
Yes, LFL 's answer was especially insightful and well said. As with all relationships, parent/child, child/grandparent/ favorite aunt or uncle, etc, it is painful to watch them slip away. With a spouse, however, it is our life with our LO that is slipping away and we have no one with whom we can share our memories of our lives together who can appreciate all the adventures whereas with the other relatives we have cousins or others who can relive certain memories of that LO with us because they were there too. It is beyond painful to realize day by day you are the only one who can remember that first April Fools Day joke you played on your husband in your first year of marriage that brought howls of laughter, or the time he whispered some sweet " muffins" in your ear and what the joke was...or just his favorite joke..etc etc etc.... As was said earlier, we remember how they loved us, we remember all those tender moments, we remember, we spouses of the vicious AD but our LO does not and that is a sadness that no recording can soothe.
Mimi......... ....You certainly explained the difference between caring for a spouse with dementia and caring for any other relative with dementia. It's difficult for a lot of friends and family to understand. ......Thank You.......
Rudy.....Maybe I have something to offer you...... ...You ask in what ways do we preserve the memory of our past loved ones. It's interesting that you should ask that question because that's about all I've done since she left me, one and a half years ago. When she was just 86 and I was almost 91. Since then, I must have written over one-hundred stories about my Helen and the things we did together. And not only stories, but since I play around with music, I've made a bunch of not so great songs about her. ...I've always enjoyed playing around with music, and I learned to write stories by communicating on this site, so with nothing else to do, it was just a natural result. ...Also, I've spent a lot of time going through all of our family photos, (over 1600) that I had on a computer, old 8mm movies, old VCR tapes, and videos from digital cameras, making slide shows and DVD videos featuring my dear Helen. ...In my mothers memorabilia, there are two sets of stories written by old men who's wives preceded them in death. My son-in-law's dad did the same thing, as did one of my uncles, so I think it's just what old men do. Younger men in their 60's, 70's, and early 80's can have other interests. ...Today we old men are fortunate that we don't have to save our stuff as typewritten pages and printed photos or tapes to lay around and gather dust. We can just save them all on a hard drive. In fact I created a website just for a place to put my stuff where relatives and friends can view it. ...I'm not a social hermit. I still belong to a Lions Club and have many friends and relatives all wanting to take care of me. But what I most like to do is write the stories, and assemble the slide-shows, and the videos, because in doing so I relive the memories that go with them. ....................GeorgieBoy
.....Edited....(see Mimi's note below)....Thank you again Mimi. I see now that I had misunderstood the question, and was answering a question that was never asked.......Oh well......Just another learning experience for me.
GeorgieBoy, I love your energy and ability to do this and this is exactly how WE remember our lives with our departed spouses...by looking at the pictures, listening to favorite songs, looking at our movies etc. Sometimes we will laugh at what we see and at other times, maybe at the end of a video we find ourselves needing a life preserver to save us from the waters arising from our tears caused by the horrific sense of our loss.
But to answer Rudy's question of how do we help the victim with the AD retain THEIR memories, that we can't do....
You are an amazing man, GerogieBoy and I envy your gumption and energy. Maybe in a few more weeks time, I'll start to find my sense of purpose just as you have. You are our inspiration!