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Originally posted by: D.D.Smith
Lonliness is really a BIG problem for me. We've never had a big circle of friends, and moving and some deaths have taken most of them away. Plus he and I have never been "chatty" together. One can be very lonely even with a spouse sitting in the next chair.
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Joined: 1/14/2015
Posts: 40463
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Originally posted by: DLMifm
It struck home a last Thursday support group everyone was dealing with loneliness. Their LO's were in ALF's or NH's and each was hurting from being alone at home. Past meeting discussions focused on caregiving issues. For some reason the last meeting people began revealing how lonely they were feeling.
The support groups were becoming their extended family. So sad, so frightening.
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Originally posted by: DLMifm
quote: Originally posted by D.D.Smith:
Lonliness is really a BIG problem for me. We've never had a big circle of friends, and moving and some deaths have taken most of them away. Plus he and I have never been "chatty" together. One can be very lonely even with a spouse sitting in the next chair.
I can so identify with this. I'm now with my wife basically 24x7 as a carer. We used to go fishing and take trips to Maine. Last year I went fishing twice and without her it just isn't the same. Now the snow has stopped the rain has moved in. With good weather we hope to get out on day trips. In them mean time she sleeps and I escape onto the internet.
We have two boys on the West Coast and the time difference is big PIA.
High on my to do list is breaking the daily mold<G> and finding free things for us to do. Just to go up and back to mid coast ME is now $80.00 in gas (a tank full last week was $40.00). Now if I weren't so durn tired
It's been raining and thundering. I looked at the lawn, it wants to be mowed. I's rather go fishing.
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Originally posted by: Astro
That's why a support group is a vital part of this process for many. They do each understand and can support one another. That's doesn't seem sad to me. It seems like people relating to one another.
I know nothing can replace a spouse and that many caregivers don't have any time for themselves, let alone friends or family. But those who do eventually get some time really need to focus on rebuilding social outlets: family, friends, co-workers, church or assembly, hobby groups, etc.
You cannot replace what you've lost on many levels...and grief therapy may help process those feelings. But it's important to have social outlets when time allows. Some may know your story, some may not. But be willing to accept support and friendship wherever you can find it as that will put some spark back into your days.
I have been to some very sad support groups...but there is a strength that comes from finding out that others share your experiences when it sometimes feels nobody possibly could. Embrace those people who reach out, reconnect with old friends and family after a placement and as time allows. You cannot fill the void but I think you can compensate with good friends and supportive friends that create their own joys and benefits.
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Originally posted by: Amy Ann
I have been feeling this too. It's like having the shadow of the person who was my best friend around. Now his mostly silent presence, and the drone of his reality tv, is a constant reminder of how truly alone I am. I don't even feel like I am able to relate to others like I used to. Like being outside of normal life.
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Originally posted by: jfkoc
I think I would feel less lonely if I were in my home alone. Very sad.
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Originally posted by: Jim Broede
I'm fortunate. I'm able to talk to the spirits. So in that sense, I'm never alone. Never completely lonely. Especially when I'm out for a walk. In the great outdoors. On a mountain top. Or at the seaside. Or in a forest. It's a frame of mind. A feeling of wonder. Of oneness with creation. --Jim
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Originally posted by: Starling
The isolation and the loneliness is the hardest part of caregiving. If you place your LO, it continues in its own way, different but still there.
One of the big jobs in the placement phase or the AFTER phase of caregiving is rebuilding your lives and your contacts with the outside world.
Take it from someone who has been doing the placement phase of this now for 10+ months. Not easy.
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Originally posted by: DLMifm
quote: Originally posted by Starling:
The isolation and the loneliness is the hardest part of caregiving. If you place your LO, it continues in its own way, different but still there.
Dot and I have been there {not quite the same perhaps) Dot's mother went through the stages and died in NH, her sister the same. I was with Dot during the travel.
Thanks for your thoughts
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Originally posted by: Cathy J. M.
quote: Originally posted by biccoastal:
We no longer fit in with normal healthy people, so I am getting more isolated every day. Cannot imagine how much more scared and depressed I would be without this electronic community.
I'm not at all sure that we don't fit in with normal healthy people. In fact, I think it may be a mistake to believe that.
However --this forum helps me a lot too. I didn't feel like a good fit in the local AD support group; didn't even feel welcome, actually. Another support group I liked a lot, and learned quite a bit from -- but it's an hour's drive each way so I only went once.
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Originally posted by: Starling
It isn't that the grief and pain of being a spouse caregiver is greater than being a child of the patient, it is that it is DIFFERENT.
Generally the children still have a life outside of caregiving. They have spouses, and jobs. The isolation isn't as complete. They aren't losing their main support system to the disease. (I'm aware that some caregivers taking care of parents don't manage to have real lives anyway, but for most that isn't what is happening.)
What happens when it is your spouse who has the disease is that the isolation occurs so gradually that at first you don't know it is happening. One day you wake up and realize you haven't had a real conversation with someone who understands what you are saying for months. That there is absolutely nothing to look forward to, and it is unlikely that there ever will be. That you are at the end of your rope and you have no idea what to do next.
I think that is why placement generally seems to come when there is a crisis. It certainly did for me.
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Originally posted by: So Sad
I would love to be able to go to a support group, but it is a 2 hour drive each way. I will say during the period that DH was extremely nasty I had dark thoughts for myself and really needed support, but I got on here and felt better. I don't think anyone can really relate to what we go through unless they have experienced it too. I thank god for my grandchildren, I don't feel like I would have much to live for if it weren't for them. I am lonely so much of the time, my friends don't understand why I don't feel like I can leave DH here at the house by himself to go and eat dinner, and visit. I know this is the new normal for our lives, but it is a hard pill to take.
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Originally posted by: biccoastal
I live in a town of 25,000. We have one support group that meets monthly. After many months of frustrating schedule challenges, I went to my first support group meeting last week. My expectations were too high and I feel even lonelier now. Not one member was a spouse - one had a very elderly AD mother living with her and each of the others had a parent in the care home where the meeting took place. Not to minimize the anguish of middle-aged children whose parents are fading away, but I was so disappointed not to find people like all of you. People who are lonely even with a life partner 10 feet away every minute, people who are learning to shoulder all the burdens all the time and sometimes staggering under the load. Is this typical of community Alzheimer Caregiver Support Groups? We no longer fit in with normal healthy people, so I am getting more isolated every day. Cannot imagine how much more scared and depressed I would be without this electronic community.
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Originally posted by: DLMifm
quote: Originally posted by So Sad:
I know this is the new normal for our lives, but it is a hard pill to take.
It sure is!
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Originally posted by: caregiver917bouldercolorado
quote: Originally posted by Amy Ann:
I have been feeling this too. It's like having the shadow of the person who was my best friend around. Now his mostly silent presence, and the drone of his reality tv, is a constant reminder of how truly alone I am. I don't even feel like I am able to relate to others like I used to. Like being outside of normal life.
yes, the shadow of the person makes it much worse.
i want to tell my spouse about something I have read or seen. she doesn't understand and if she does she cannot put her ideas or thoughts into words. much more lonely in many ways than being alone
also, i feel guilty about being with friends with whom i can share instead of with my spouse.
maybe the guilt will lessen?
thank you W Colorado
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Originally posted by: Jim Broede
I think there's a cure for loneliness. It's called occupying one's mind with positive thoughts. Being captivated by the wonders of life. --Jim
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Originally posted by: Cathy J. M.
quote: Originally posted by caregiver917bouldercolorado:
[QUOTE]Originally posted by Amy Ann:
i want to tell my spouse about something I have read or seen. she doesn't understand and if she does she cannot put her ideas or thoughts into words. much more lonely in many ways than being alone
also, i feel guilty about being with friends with whom i can share instead of with my spouse.
maybe the guilt will lessen?
Try to figure out what the guilt is really about; that will probably make it easier to release it.
Your spouse can still be primary in your life, and you can still have a close connection -- with touch, music, any pleasures you can still share -- nice textures, watching a bird feeder, looking at pictures of butterflies and flowers, whatever works. Sometimes just being close and silent together, with you relaxing and opening to her spirit (which is definitely still there!), will give that sense of deep connection.
And as long as your spouse is well cared for while you're away with your friends -- you not only needn't feel guilty, it's time to congratulate yourself for good self-care. I wouldn't share with friends in FRONT of your spouse, or go in another room etc. -- which could make her feel left out or ignored. But going out to lunch or to an evening event with friends -- why not?
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Originally posted by: DLMifm
quote: Originally posted by Starling: What happens when it is your spouse who has the disease is that the isolation occurs so gradually that at first you don't know it is happening. One day you wake up and realize you haven't had a real conversation with someone who understands what you are saying for months. === <DLM>> The change is gradual, suddenly you realize familiar conversations with your spouse are no longer being processed, or they turn into endless series of repetitive questions etc. <<< That there is absolutely nothing to look forward to, and it is unlikely that there ever will be. >DLM>> I find what there is to look forward to is frightening and disheartening. Is it a race to the end  <<< That you are at the end of your rope and you have no idea what to do next. >DLM >> The local AA help/support line calls me every four or five weeks to encourage me and to keep me from getting to the end of my rope.If you had brought up a subject in an earlier call they follow up to see if you made the call or completed the project. <<<<< I think that is why placement generally seems to come when there is a crisis. It certainly did for me. <DLM>> Last year when I was hospitalized this almost happened. to both of us. <<
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Originally posted by: lurk
bicoastal, do you have a church group that is closer than the support group. I would think that any denomination would be happy to be able to provide support for someone in need.
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Originally posted by: biccoastal
Thanks, Lurk. Good idea. DH is inexplicably hostile about churches and religion and I got tired of hearing about it, so stopped attending church. Bad move. I miss it very much and I think it is time to go without him. Who knows? He may forget that he was so disdainful and go along with me. Even if he doesn't, I am the one who needs comfort and community and church sounds very appealing.
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Originally posted by: Linda Dianne
D.D.Smith
I hear that. With husband not talking much it is very lonely here. I craving for someone to talk to many of times.I hate this disease.
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Originally posted by: lurk
Yes, you are, bicoastal. I don't know what I would do without mine.
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Originally posted by: DLMifm
quote: Originally posted by SherylS:
I don't have the drone of his reality tv but I do have the never ending country western channels! ARGHHH
I will dig through my notes. There are wireless devices that will place the TV sound close to the listener. I know of one system that uses earphones which may not be acceptable. I think there is another that uses a a pillow speaker.
DLMifm
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Originally posted by: DLMifm
quote: Originally posted by biccoastal:
Thanks, Lurk. Good idea. DH is inexplicably hostile about churches and religion and I got tired of hearing about it, so stopped attending church. Bad move. I miss it very much and I think it is time to go without him. Who knows? He may forget that he was so disdainful and go along with me. Even if he doesn't, I am the one who needs comfort and community and church sounds very appealing.
We have a Caritas group at church that helps those in the congregation who face difficulties such as hospitalization, illness, etc. Following a call from me they are now developing a friendly visitor program. We discussed the loneliness faced by housebound LO's and their carers. It will be interesting to see how they do in structuring a program for ALZ carers.
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Originally posted by: SherylS
I don't have the drone of his reality tv but I do have the never ending country western channels! ARGHHH
I'm also thinking that the local support group isn't a good fit for me either. Last meeting there were 30 people! No one really had a good chance to discuss an issue and get feedback. The moderator kept everyone 'moving along'.
I'm thinking of suggesting she set up several table of 4-6 people so we can really get to know the others. 30 people is too much. There were some I'd have like to talk to more, but never got the opportunity.
Or maybe I'll just go to a different group. There are several in this area....
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Originally posted by: DLMifm
quote: Originally posted by DLMifm: quote: Originally posted by SherylS:
I don't have the drone of his reality tv but I do have the never ending country western channels! ARGHHH
I will dig through my notes. There are wireless devices that will place the TV sound close to the listener. I know of one system that uses earphones which may not be acceptable. I think there is another that uses a a pillow speaker. DLMifm
Here are two solutions:
http://alzcarerdandyfunk.blogspot.com/
Carer Dandyfunk ALZ Listen hear Impaired hearing, loud radio TV etc., background noise
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Originally posted by: Amy Ann
A friend gave me the suggestion of using the parental controls on the cable to control the violent viewing since we have small children. I'm not wanting them to get kicked out of preschool for swearing! Just thought I'd share that in case it might help anyone else. I thought it was pure genius.
Country western and westerns sound challenging as a constant background. It's weird what people pick to watch with this disease. Why couldn't it be nature programs with pics of pretty fish!
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Originally posted by: DLMifm
quote: Originally posted by Amy Ann:
A friend gave me the suggestion of using the parental controls on the cable to control the violent viewing since we have small children. I'm not wanting them to get kicked out of preschool for swearing! Just thought I'd share that in case it might help anyone else. I thought it was pure genius.
It is pure genius! Thank you.
Dave DLM
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Originally posted by: JAB
quote: Originally posted by caregiver917bouldercolorado:
yes, the shadow of the person makes it much worse.
i want to tell my spouse about something I have read or seen. she doesn't understand and if she does she cannot put her ideas or thoughts into words. much more lonely in many ways than being alone
also, i feel guilty about being with friends with whom i can share instead of with my spouse.
maybe the guilt will lessen?
Boulder, hi. It's good to see you post again.
Cathy's advice is excellent. When words no longer work, expressions, body language, and touching can.
And do put a high priority on caring for yourself. Those little breaks to be with caring friends are essential to your own health and well-being.
How is your son doing?
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Originally posted by: mary alice 46
dlmifm, I also have the never ending western channels, oh boy ,at times I just want to walk away, The same movies play all the time ,but he likes this , so I watch with him, and Iam reading a book .at times I fell iam still alone, even with him in the same room. he has staged into the late 5th stage, his language is off alot lately.he is getting harder to understand, but i try. I have made plans to go out each tuesday with my gril freind. this is helping me alot hope, love laughter
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