My mom is now 101 and lives with me full time. I had to stop working full time. She is going to a senior center 4 days a week, and I see a therapist and go to caregivers meetings and try to do “me” things. Would like to know why family and friends have disappeared from our lives, I feel alone, angry and very tired.
You have more in common than you think with your friends.
How many of these women are now widowed or their spouse is currently residing in a nursing home?
Should they be either of the 2, ask them how they coped with the situation before their spouse died or now resides at a different address (as Rev Billy Grahmn stated to family members and friends).
Again, if they fall into either category they have been freed by death or having to move the spouse out of the home.
Those who have a spouse in a nursing facility; ask them how often they visit their spouse, how long they stay, what they do that the staff does not for their spouse.
If these women who have a spouse in a nursing facility do not visit, do something special, limit their visiting time; I would say, in my opinion, they have thrown the baby out with the bath water, decided someone else can do the job and they are now free of all responsibility.
I have called so many nursing/rehab facilities and each have told me that I do not have any idea how many families drop off and leave never to return until they get "the call".
Read the newspaper, watch a news channel anything that will keep you up with current affairs.
I know you are tired due to everything you are doing, but take 15 minutes periodically during the day for you.
If you're a member of AARP, ask what they can do to help....you pay "dues" to belong!
If the group you mentioned has a newsletter, have it emailed to you.
It's going to be ever so difficult, but I'd try to think of it like this:
When you had your babies and none of your friends had babies, you most likely talked about your bundle of joy all of the time. Your friends didn't tell you, but they got tired of hearing about your baby.....until they had their own! Really, how long can any one stand listening to how long the delivery took, labor pains, the weight/inches of the baby.....
These same issues happen when you're the last one in their shoes. They should be helping you by expressing what they had to go through along with how they dealt with it.
It's life in the reverse and we all will need help at the beginning/end.
I like your comment about the kid that we all have within us who gets scared.. yet kids not only get scared, they can also be self centered and selfish, maybe without really meaning to. I think that also explains part of “friends” or even relatives behavior. They just prefer to ignore, to avoid. I don’t really blame them, but it is lonely, exactly how you describe it.
Glad your wife can count on you and that you’ve found the strength and love to be her everything, not with the romantic connotation that phrase has when young and in love, but now, when it’s true meaning really comes to life!
I have a "friend" that has her 88 year old diabetic, hypertensive mother living with her for the past 11 years. The mother is a very opinionated woman and makes life rough.
My friend works full time and refuses to cater to her mother's increasing needs. She'll leave for the weekend or goes out to movies or dinner. This would sound great--how autonomous of her--not being defined as just a caregiver--having a life of her own and something "else" to talk about.
The bad part is that her mother is becoming more and more forgetful. She has left the stove on, the water running, the refrigerator door open, the front door open, gets the mail but "looses" it, to name a few. My friend took the knobs off the stove but seems very casual about everything else. She sets up her mom's meds in the Medi-planner but mom has to remember to take them and not forget which day it is. Mom is also loosing her sight.
I've been encouraging her to check into Medi-Cal (Medicaid) for when she needs to be placed. She's finally done some investigation but isn't through by any means.
I think my friend has had enough of caregiving and wants her life back. She wants to rejoin her circle of friends and have it be like the good old days. Sounds good. She's only 49.
But, IMO, she's sacrificing her mother's safety to do this. I've had to stop talking to her about it because I get frustrated. She knows my opinion. I think she's "fried", feels she has lost her life and wants it back.
Then be responsible and place your mom in a safe environment first, then go party.
Then it boils down to a rare few with true compassion and understanding and are more aware of how painful and difficult things must be by considering how they would handle such a life. I have one or two friends who are special that way. But make no mistake, I ultimately live alone and lonely. Intimacy, physical or emotional, isn’t a part of my life. From what little I know from being on this site for 2 weeks, most of us aren’t too much different.
If I make contact with my friends they respond and are happy to hear from me. The conversation is short and sometimes uncomfortable. The important things in each of our lives is just to different.
I understand your point, very valid in many cases. But let’s remember the difference between a caregiver and the rest when it comes to socializing (assuming you actually get to socialize):
When we are kids we all play and talk about games -dolls in my time!-, school,etc.
When we get to teenage years we talk about boys, clothes, lipstick, etc (other things if it’s a boy).
When older we talk about Universities, what you want to become in life, a Car you want..maybe boys again! Lol
When in your twenties or thirties we talk about getting married, planning weddings, our career, how excited we are about life.
Later in life we talk about family, about kids, about husbands, about how we don’t have time for anything anymore, about fun vacations, etc.
...Then, some of us become caregivers. The rest of the world keeps talking about kids, or grandchildren, about husbands, about vacation, about life. We don’t get to travel, don’t get to go to get coffee sometimes! We just go to the supermarket, and most of the time interact with the person we are caring for.
We lose common ground with the rest. We really don’t have much to talk about, because our news are not the type others enjoy or UNDERSTAND.
Caregiving is by default an isolating task, it’s simply the truth. And although I agree we need to make an effort to keep ourselves as part of the world for our own good, it’s also true that those in the world that really care about us will understand the situation we are in. The rest, actually can become noise! Like a burden to pretend we are part of a daily life we’re not because our daily life is so different!
Yes we need to make an effort to get a break from the situation we live in, but it’s not our conscious decision to become isolated. It simply comes with the territory.
Grandma1954 made a lot of good points. If you are never available to do anything (and I am not talking big plans, just lunch, a movie or a quick phone call) people will stop calling. Or even worse, you make plans that you constantly cancel. People will stop calling. They will feel they are bothering you.
If someone asks if you need help, accept it. You can't turn them down time after time then get mad that they stopped asking. My son used to offer to help with snow shoveling with his step father who always turned him down. After awhile the kid stopped offering and my husband was indignant that no one offered help. I chewed him out over that. If you turn people away each and every time they will get the hint.
If you only topic of conversation is care giving that will get old too. For a year I was consumed by a bitter divorce and it was all I talked about. After awhile I could see my friends were getting tired of hearing about it.
My best friend moved away a long time ago. She would visit the area on occasion and I would get a lunch out with her. It wasn't much but I was happy with it. Then she didn't have the time to go to lunch with me. I tried to keep in contact but she made little to no effort. And the life log friendship faded.
My point is, your friends are still there, you just aren't. Try reaching out to them instead of waiting for them to come to you.
At this time in my life, I am assessing what a "friend" really means. And I think the whole "friendship" thing is a bit over-rated.
To me, a friend is someone who gives you their time when you need it (I just eliminated 70% of my "friends"), makes an effort to stay in contact (eliminated another 20%) and stick with you through hard or boring times (eliminated another 9%). So, I am left with the 1% who I know I can count on. She is 91 years old. I was her husband's nurse for 2 years before he died and we formed a great friendship. I just had lunch with her on Monday.
I'm truly disappointed in the other 99%. Especially since I stuck with THEM through their hard and boring times. I live in Tijuana, so I'm not able to physically visit with them. One friend of 25 years for no reason (known to me) refused my phone calls for 3 months. I finally gave up. We haven't talked for 5 years. She called and left a message a few months ago, hoping to get in touch. Phooey! I could have died for all she knew or cared. I didn't call back and don't want a friend who abandoned me.
Another friend, this time a BFF (best friend forever) threw me aside when she got a new man in her life. Again, this one wouldn't answer my calls for many weeks (honeymoon period, I guess). She called back after a year (reality set in?) . Again, Phooey! No girlfriend throws you away for a man.
A "friend" from grade school (49 years) and I were so close. I was her son's God-mother. I talk to her once a year. She says, "I love you, Sue" when we hang up. I just about puke when I say it back. I don't love her. I don't even KNOW her. She thinks we're close. (?)
Another friend from work didn't like the fact I married someone of Mexican decent, so she cut me out of her life. But 4 years later she called a mutual acquaintance asking for my phone number. I told the acquaintance to tell her I died. She told her, "Sue told me to tell you she died". (hahaha) I don't want to be her friend because I'm not prejudiced.
At work, I had to hear about all her lovers (many at the same time!) while she was still married. She asked me for a threesome!!!! You know why I'm not HER friend anymore.
Friends are over-rated. Friends disappear because they have little or nothing in common with you. They would rather not be bothered in the hard times. They give up if you don't serve their needs. They don't bother because you are no longer like them-self centered. What you are doing is self-sacrificing. Maybe they've got a guilty conscience.
In your case, I would reach out to those who could assist you. Don't try to be a hero and do it all yourself. Tell them you need help.
I'm sorry that people can be so intolerant and self absorbed. I've learned to live without them. People will always disappoint you.
They certainly don't fall under the dictionary explanation-"One who is attached to another by respect or affection". Those people are hard to come by.
I care for my husband and have caregivers 4 mornings a week to get him up, bathed and dressed. This does give me a bit of gym time.
But -- I feel I have nothing to talk about except my situation, Medicare rules and regulations, caregiving and my current challenge with the situation.
I have a group of retiree friends who lunch monthly. I no longer attend these lunches but was asked to a weekend event of a special member. I was excited to get to see everyone. After the gathering, and looking back, I feel that I had nothing to add to the conversation, nothing currently in common with these people and feel like I rained on their parade.
I will probably not maintain my relationship with the group -- just one or two members.
On the other hand, I have a friend who "has been there" and feel I can have an honest conversation with. I can ask the hard questions and make the inappropiate comments about being in this situation.
I understand the pulling away from old friends -- it is way too hard to keep up a happy-go-lucky front -- and truthfully, we don't have much in common in our lives right now. It is very hard to sit there and be asked how I am and just say "fine" --
Re: help -- only one neighbor has offered help. Others watch me struggling to clean up leaves and never offer even their kids help. I hope I am becoming a better person.
This is a hard road, one we never asked for -- and most don't even want to think about being in our place.
So -- I hang with my reading friends -- we can talk about books; my gardening friends -- we can talk about this year's plantings; and my caregiver friends-- we can talk about our lives.
My hear goes out to every one of you --
I too see a therapist for guilt, depression, anxiety and so many other reasons; mostly from my disability.
Part of my guilt and depression comes from not being able to take care of my Mother. The family member who claims to care for Mom, having "ME" time is not an issue.
This family member can't find the time to do the job of caring for Mom. I go on Facebook periodically to see what adventure this family member is on with said children/grandchildren.
I'm currently trying to find ways to care and feed my parents while said family member eats out, goes on weekend trips, comes home from work, sleeps, goes back to work and weekends spent away from Mom's house where this family member has been living ren't free for 10+ yrs!!
I'm doing all of this living out of State. There are things going on and when I can get things arranged, I'll be caring for them out of State, BUT with the help of one of Mom's brothers.
We're at the opposite ends of the spectrum at this point in time, but I'm going to do everything in my power to take care of Mom and as hands on as possible.
Although I won't technically be in your exact position due to distance, I'll still feel separated from the world.
Now, have any of you checked State agencies that provide Respite time? Some of these agencies provide this service for free or a minimal cost.
My grandmother used this which was provided through Medicare when she was taking care of grandpa at home dying from cancer. It helped to keep her sane.
Bless all of you for taking care of your parent(s).
Yes, a true friend would either spend time with you in the home or help provide you with some means of respite i.e. Church women's league to help.
#1 Did the caregiver have to move away from their family? (a yes for me)
#2 All of the elder's friends have died.
#3 The caregiving usually falls on one person.
#4 If the caregiver had to leave their home and move in with their LO, they will not know many people in their LO's town.
That’ll do wonders for you, even if you come back still hurting, your mind will receive a free therapy session just through the interaction with other people and lovely doggies.
As long as your mind is healthy you will be able to deal better with all the rest!
God bless you!!
Today, I am visiting the dogs at the shelter, feeding them cookies, and talking to them.
Having a hard time getting dressed for that because I am so busy, I hurt, and had to lay down for a minute. It is cold out, but I have to do it. I have to get out, it is important.
Looking out the front window and seeing people does not count as socializing.
I am going now.
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Seeing a counselor, therapist is like dating.
You may have to go through a few "frogs" before you find a "prince" of a therapist.
Do not let an experience with 1 therapist stop you from looking for another. If you have to ask your doctor for another referral to someone else.
Right now, I use Facebook and messaging to keep in touch with people I care about. I find I have to really work at keeping in touch with people who don't do either. My husband's best friend and his only remaining sibling, don't call us, so I call them. I am also lucky enough today to be able to get out. I take advantage of it now, because I can see the day coming when I too will probably be shut in with my husband.
I don't want to say "now I know who my friends are," because I DID do some of the pushing away, or at least lack of relationship maintenance. But for sure now I do know the ones who will never give up on me!
Lately, I have been making an effort to get back in touch with friends I put on the back burner, and I've been delighted to find they are still happy to be right there for me.
I saw this and yes I’ve thought the same thing. My mom is still living on her own with my brother but I’m just 5 miles away. She has the beginnings but cstays silent and is in denial.
I have seen a counselor myself but felt I was talking to a brick wall.
I feel for you and yes you hit it on the nail of what I feel. The friends I’ve even known for years, don’t call or anything anymore. They know like you about your mom, yet I always tried to talk about other things and it’s like they left! Then for myself I go.. “ what did I do wrong?” Hurts your heart. Good question and bless you.
- Being with us is not FUN anymore.
- We are never FREE
- We are easily FORGETTABLE, as anyone that cannot be part of life as people “like” life to be...until that day, the day!, when they become either caregivers or subjects of caregiving.
I sometimes had phone lunch dates with a good friend. We'd both get our lunches ready and call at a designated time. She knew that I might get interrupted to attend to my husband, but that didn't happen often.
To overcome isolation in a caregiver situation often requires creativity, and most of us use up every ounce of creativity with our loved ones. Socializing can seem like one more problem to solve!
Deniseec63, have you talked with your therapist about this topic? It would be interesting to hear that perspective.
1. Friends call up and ask if you want to go to the movie or out to dinner...You say no I can't I gotta take care of Mom. Pretty soon they stop calling and asking if you want to do something.
Solution...Get someone in one day a week for 4 or 5 hours and go out with your friends. Difficult because "no one will do what you do as well as you do" but you have to care for yourself!
2. They ask if there is anything they can do to help and you say....No that's ok I'm fine or we have what we need right now, thanks...So they stop asking...and you seethe wondering why no one helps out.
Solution...When someone calls and asks say..Gee that would be great, next time you are at the store could you pick up a bunch of bananas and a loaf of bread, and there is some soup on sale this week could you get a few cans for me?
3. When someone calls up to talk a bit and you say you are busy getting Mom lunch, or doing the wash. Pretty soon they stop calling to chat.
Solution....Sit down for a few minutes and chat. Then ask if they can come over for a visit. Make a cup of tea and enjoy a visit. Who knows Mom might like to see a new face as well and possibly have a nice chat with someone else.
Lastly realize that you can not do it all by yourself and that if you don't have help now you will need it at some point.
At some point you may have to start using equipment to move Mom from bed to chair. Maybe a Sit to Stand at first then a Hoyer Lift. If this is not something that you think is possible it might be time to consider placing her in an Assisted Living or Memory Care facility where her needs will be met and you can visit, enjoy the visit as a daughter not as a caregiver. And at that point you can begin to rebuild your life.
Another note...Your profile says you are caring for someone with dementia, probably Alzheimer's and you are caring for your Mom with general age related decline. If you are caring for 2 people this is a LOT!!! No wonder you feel isolated. If it is 2 people you are caring for is there any way that you can step back a bit from one or the other? Get other help. Think of a house being built, there are the workers, the electrition, the carpenters, the drywallers and in charge of all of them is the General Contractor. You should be the General Contractor and delegate.
As family goes it was "out of site out of mind". My siblings knew I was caring for Mom so they just went on with their lives.. And I didn't ask why?
It's been almost 2 years since my Mom passed and I saw my siblings Christmas time at my one helping sisters house. They all see each other often but I tend to still keep a distance... I'll never forget my years of caring for my Mom and I'll never forget their selfishness..
Family dynamics play a huge role in whether or not family is available to help. My mother's partner of 25 years has been diagnosed with dementia. I will not help in his care in any way at all, including helping my mother care for him. My mother chose to have a relationship with him, not me. He has done monstrous things in the past and as far as I am concerned he can reap what he sowed, as can she for accepting his behaviour, (abusing my children and various peoples pets),
I have a dear friend who would never consider asking for help. As such it is up to her friends to try to determine when she needs help and how to best help her. Me, I will ask for help and I expect others to ask me for help when they need it. If I do not hear that help is needed, my first assumption is that everything is in hand.
As a friend I have a limit to how many times I am blown off before I stop calling. Yes, I know there may be an situation that needs attending immediately, but if I do not get a call back, text or email, why would I keep following up?
When i was doing errands in their town - people would stop me and ask how they were. I started telling them my stepmom was feeling pretty isolated and would welcome a phone call or a visit. People started reaching out to her. This gave her confidence to reconnect with other people she missed. I think the isolation comes without us being aware until it is full bore and people do not want to intrude or do not know how to help - so do nothing.
Perhaps one of the first things you can do is reconnect and just let someone know you were thinking of them.