A comment on a post I wrote a couple of nights ago raised an issue that is significant for many Caregivers who are doing full time caregiving all day long every day. The writer mentioned that she often uses the time after her Loved One goes to bed to try communicate with others, since the opportunity for adult conversation is limited.
For many of us conversation that was a routine part of our daily lives with our Loved One and with others has pretty much ceased. Especially those caring for someone with a form of Dementia find it tough to converse meaningfully. A number of recent emails from others who are caring for spouses with Dementia have included reflections on the challenge of dealing with the lack of meaningful conversation and the loneliness that sometimes settles in.
Until I retired a number of months ago, I was active in a profession that involved lots of meetings, visiting with people, counseling folks struggling with problems, speaking in front of groups, and many hours each day communicating electronically (email). All of that came to a halt pretty much the day I retired. Emails ceased, phone calls stopped, meetings ended, there were no more visits to be made, no more speaking in front of groups.
Now there is one person stuck with me twenty-four hours a day, seven days a week, someone who has never really been a talker and now after twenty-two years of Parkinson’s has taken its toll finds great difficulty getting thoughts into words and sustaining conversation. She has struggled with the challenge of having me there constantly, so I can hardly complain. She tired long ago of listening to my voice as it drones on and on.
One comment in an email I read tonight provided an image of the Caregiver in need of communication. She mentioned that when she was at the dentist getting her teeth cleaned, every time the Hygienist took her hands out of her mouth she started talking immediately, not stopping until the instruments were back in her mouth.
I find myself starting conversations in with strangers in line at the store, or making conversation with the person at the register. Anyone who dares cross our threshold is likely to be fully engaged in conversation by the time their second foot has landed inside.
Anyone who reads this blog has certainly noticed the length of the posts. When I write I imagine that there are people actually reading this with whom I am having conversation.
Living in a world of silence other than the sound of the television, can certainly produce a deep sense of loneliness. I suspect there are lonely Caregivers by the tens of thousands out there. It seems to me very likely that lots of them, probably a majority, are not computer users who have the option of going online and relating to others regularly. If the Caregivers are lonely, imagine how lonely and bored those who need the care must be.
There are no simple solutions to the loneliness and isolation, the boredom and lack of conversation that comes with the Caregiver and Carereceiver territory. For me the battle with loneliness starts with developing a rich inner life that experiences each moment fully and fills my thoughts with wonderful images from my environment, from reading, from the lives of others I have encountered, from my own story, from a head filled with unfinished business, from intellectual and spiritual curiousity.
While I have never been a writer, the exercise of writing these posts is safisfying and fulfilling. Reading emails and occasionally responding to those who are caring for spouses with Lewy Body Dementia is engaging. When Volunteers come to stay with Mary Ann to give her a break from my constant presence, it takes me a long time to get out the door as I engage them in conversation. I find myself on the phone with brothers and sisters more often than ever before in my life. Trips to the coffee shop to get a cup of coffee take a little longer. When we attend the Parkinson’s Support Group meetings, I am not shy in speaking up.
Since I am not good at all at small talk, I know very little about sports and I am completely uninterested in debating politics, conversation just for the sake of talking is not all that satisfying. I suppose I can talk about the weather with the best. I do have a genuine interest in people’s stories, so given the opportunity, I will find out what you do and what you like and dislike about it, where you have lived, what challenges you have faced and how you are coping with them. The problem when homebound by the Caregiving task, or the chronic illness, is that the opportunities for such meaningful conversations are limited.
While it helps, electronic communication is not fully satisfying to me since I thrive on the non-verbal elements of communication as well as the actual words themselves. Getting out of the house with the one for whom you are caring is worth the effort. Go anywhere. Do anything. Put yourselves out there where the chance for human interaction and verbal interchange is possible.
Every job has its good points and its bad points. The trick is to “accentuate the positive and eliminate the negative” as the lyrics to an old song say. Celebrate what is good that the Caregiving experience brings into your life. Refuse to give the negative more power than it is due in ruling, in defining your life. I know that is far easier said than done.
Caregiver loneliness — Are you? What are you doing about it? What works for you?
If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,” click on the name of a post and you will find a box at the end of that article in which you can write a comment. Clicking on the title of the post you are reading will accomplish the same thing. Comments are appreciated.
April 9, 2009 at 5:13 am
im not a caregiver, but i have one. i dont have many friends or go out often, but i do have the internet as an option. most chat rooms bore me, but i found an even better outlet. its called secondlife, its a 3d world online. you should check it out. theres always a ton of people to meet and chat with. their are people from all over the world in SL and all are of various ages. it also has an option for voice chat. you can hang out, go to a club, listen to live music, meet new people, chat.. even build if youre so inclined. 🙂
April 10, 2009 at 3:30 am
Since I am not much of a tecchie, I didn’t know about Secondlife. After reading your comment, I Googled Second Life and read a couple of articles. I can see how engaging it could be especially for someone who is not able to get out much and who is willing to commit some time and energy to moving into a three dimensional virtual world. It appears that the possibilities for its use have only begun to be probed. I can imagine the freedom and mobility available in Second Life to be quite a contrast to the lack of freedom and mobility that comes with whatever has resulted in the need for a Caregiver. Thanks for sharing the option. I sure have a lot to learn!
April 10, 2009 at 9:41 pm
if you ever decide to try it out.. look me up. my name in there is elllejay ohmai, i can show you around. the three L’s are not a typo lol.
April 14, 2009 at 1:38 am
Pete
You are continuing to do an awesome job with the blog. Keep up the great work and contemplation! You are very helpful to others–even when you can’t see thier smiles or hear their sighs and affirmations.
April 14, 2009 at 4:34 am
Thanks for the comment, Karen. Needless to say, my posts are too long by blogger’s standards, so I appreciate evidence that some are reading them. You were mentioned at our last Parkinson’s Support Group meeting. You are held in high regard!
April 15, 2009 at 6:24 am
Hi, I’m writing all the way from Singapore! I’m working as a Medical Social Worker and is tasked to give a talk on the topic “Caring for People with Parkinson’s & their Caregivers”. Was searching the web doing research on the topic when I came across your blog. Thanks for the sharing of your rich experiences, of which, I certainly can use & quote during the talk to encourage the other caregivers!
April 16, 2009 at 1:59 am
Thanks for your comment! Writing the posts on this blog helps me process what we are going through in our household in a way that brings out the value and meaning. It helps me keep my head on straight. It made my day (to say the least) to hear that what I have written might actually be of help to someone else. Feel free to use it to whatever extent it seems helpful to do so. I have been doing the caregiving for a couple of decades but blogging on it only a few weeks. Your comment is very encouraging.
February 16, 2011 at 6:46 pm
I am pleased to find your blog. My husband of 50+ years is now in a Alz unit and I am very lonely. I usually spend 3 afternoons a week with him. We can still go to limited places usually once a week.
The years before he entered the unit, I became isolated from friends and activities. My friends are supportive but have their own lives as well as my family that lives hear.
Just need someone to “chat” with a few times each week and hear what others do to fill the long winter days.
Thanks…Bernice
February 17, 2011 at 11:17 am
Bernice,
You are experiencing one of the toughest parts of caregiving, losing the company of the person you have known for so long. It is as if a part of you is disappearing. You seem to be a person who does not like to intrude on others. The challenge is to find the energy to get out as much as the weather will allow (spring is coming) and do things you have enjoyed in the past (maybe something new) with other people. Among them you may find someone who seems genuinely willing to listen. I have found that the right support group can be a true Godsend. There are many who are in similar circumstances, many who don’t realize how many around them are as lonely as they are. It helps to talk to one another. Waiting for people to come to you for friendship may produce a long wait. You may need to take the first step. It is hard to do with the weight of the care you give your husband, but you won’t be able to care for him very effectively if you don’t take care of yourself.
Peter
July 28, 2011 at 10:16 am
I am a caregiver and have been for the past thirteen years. My husband was diagnosed with Frontal Temporal Dementia when he was 49. It has been a slow gradual decline but he has declined very much over the past six months, which I knew would eventually be coming. He is 62 and I have very little time away from him and the time spent with him is like living in another world. He is very quiet, and when he speaks it very dysfunctional conversations as in reassuring him we only have one dog, the doors are locked and we are safe, etc.. It’s become a very lonely world. I feel that I am grieving regularly and it’s very sad and emotionally draining. I’m a very positive person and feel that I’m a survivor but recently I don’t know where to turn outside of a monthly support group. Even family doesn’t prove to be that supportive. I sympathize with others stories.
March 17, 2012 at 1:22 pm
Sharing thoughts and emotions can be an emotional lifesaver for a caregiver. We are retired. My wife has Alzheimers. She’s in moderate to severe stage, still at home. I have a different situation from most. Our 53 year old daughter has multiple health issues. She came to stay with us for some “temporary” hands on care that she was unable to handle herself, which required less than an hour of my time each day. This was over a year ago. While people were sympathizing with me for doing double caregiving, I soon realized this was a blessing in disguise. The fulltime presence of our daughter gives me the freedom to pursue many of my normal activities, plus I have someone to talk to. And with our daughter being on permanent disability, this enhances her feelings self worth, and gives her some purpose in life. And my wife is physically able to do some things to help our daughter who has difficulty getting around. While it might be difficult to entertain such a thought, some caregivers might benefit from having a second patient in the proper set of circumstances. This may end up being a longterm solution for the three of us. What better backup caregiver for your spouse than one of your own kids.
March 17, 2012 at 9:17 pm
In the last two years before I retired, my Daughter and her family moved nearby to help with her Mom. It was wonderful to have her there to help. I was able to be away for short periods of time without a worry. While I have no doubt three are many challenging times for you, it is good that you are managing them together.
November 10, 2012 at 2:02 pm
hi, just discovered your blog. I am feeling lonely and definitely the Lone Ranger. My husband of 55 yrs has alz… and our conversations are so lacking in depth anymore. Used to discuss books, etc. but he is not able to do that now. Went to a local support group and came home so depressed, am not going back. He is very affectionate and appreciative of all I do for him. But……
November 12, 2012 at 8:00 pm
Asyou have discovered it is very difficult to deal with theprofound lonelinessthat comes as the full presence of yourLovedone drifts away.The various approaches to dealing with that lonelinessare not sufficient for the task.Ihad the benefit of a number of Volunteerswho stayed with Mary Ann, allowing me to get out and be with other people as much as possible. What helped me most were two things. One was regularreading and occasional postingin an online group of those caring for Spouses with Lewy Body Dementia (Mary Ann’s form). Thatprovidedevidence thatI was not alone in thetask. Others weredealing with the same things. The other activitythat helped was writing the posts onthis blog.Theoccasional comment either on the site or in person when I saw friends who read it reinforced thefeelingof community and support. The harsh reality is thatthose thingscould not change the reality of theonslaught of the disease.It has been two and a half years now since Mary Ann died. I have found myself sometimes wishingjust to have herpresentwith me again even with the craziness the Dementia produced.Even in the most difficult of times,I found some comfort in realizing howimportant my role was in caring for her.You are making a difference in your husband’s life, more than anyone else on the planet could. It is a terribly lonely task and at the same time something of inestimable value.
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December 13, 2012 at 6:54 am
I have been a caregiver for 16 years to Julius with Parkinson’s and Lewy Body – lonliness is a real issue for me. Has anything been positive for you during that time period or is it all a challenge. I am young and this is not easy for me at all! I am referring to the isolation part. There are so many positives to caregiving though they may not be appreciated by the world at large. The lonliness is huge though for both of us, meanign Julius as well. I too went to support groups and vowed NEVER to go again.
December 13, 2012 at 9:27 pm
Tammy, I would like to tell you that I found a wonderful solution to the loneliness that comes with caregiving at the level at which you are doing it. There are a few things that mitigated the loneliness, but nothing that removed it completely. Mary Ann had Parkinson’s for 23.5 years and the Lewy Body manifested itself most clearly in the last few years. Mary Ann died two and a half years ago this Friday. During the most challenging years, especially the two years that I did 24/7 care after retiring early to do that care, there were three things that helped.
Onewas relating to an online support group for caregiving Spouses of those with LBD. Unlike a face to face support group I had easy access without leaving home. I learned tons that helped me determine how to manage meds and when something was a usual side-effect of a med and when there needed to be medical attention. As you have certainly discovered in the 16 years of care, Doctors can only do so much. I could read posts if and when I wanted and ignore them when I wasn’t in the mood. It helped me to know that there were others dealing with exactly the same things.
Another thing that helped me very much was writingthe blog. I wrote it to have some way of processing what had gone on during the day, often reframing it in a way that helped me find value. A bonus is that some people read the blog and commented, or said something the next time I saw them. Whether it was justified or not, it gave me the feeling that I was not alone. People knew what I was going through and seemed to care. The actual face to face interaction with others was most often talking with the Volunteers who came to stay with Mary Ann to give me some respite time. I realize that was a luxury not often realized for caregivers. As the Pastor of a large congregation, lots of folks joined the crew of Volunteers who stayed with Mary Ann when I was still working. After I retired a dozen or so of them continued on since they had developed a friendship with her.
With that said, there is nothing that changes the facts of the matter, the person with whom you have shared your life, comes and goes now. There are only flashes of that person. At the same time, I remember sitting on the back deck once when she was in one of the sleeping stages, hours on end, and realizing that I would rather have her sleeping in another room in the house (even though that meant I couldn’t go anywhere) than have her not be there at all.
As you said, there are many positives that come with caregiving. I consider those two years of full time caregiving to be the most important and most valuable time in my life, as well as in our lives together. I really did get far more than I gave during that time. Now that she is gone and I am trying to reshape my life, one of the greatest problems is that none of the endless options out there even begins to compare with the value of caring for Mary Ann.
Now that I am completely alone, I have been discovering who I am as a separate someone from Mary Ann. It is scary and exciting, painful and exhilirating. An acquaintance caring for a Spouse who gratefully is in remission (Lung Cancer), has been giving some of her time and attention to self-discovery, using online tools tools to take classes in areas that might help her in the future, areas that expand her horizon a bit. I would not have been able to do that when caring for Mary Ann, since her needs were pretty much constant, morning noon and night. I suspect that is the case for you.
I wish I had some great words of wisdom for you, some words that would help relieve loneliness. I suppose in some odd way, the loneliness is part of what makes the gift you are giving Julius something of such great value.
Peace, Peter
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