How to deal with the decline in dementia and feeling burned out. Add to this because I have not been "as much fun as I was."

Yes, and more to be left in the dust by, when he passes. I speak from experience, my husband died 13 years ago, the only couples that stood by me were those who I friended before my husband and I married. Next month I go on a cruise with one of the couples, they are my true friends!

I am so sorry but this is an everyday experience.

This disease has tentacles that reach far and wide, and to some degree, destroys everyone it comes in contact with.

I wish you peace in your hearts and the blessing of new and more true friendships in the coming years.

When my DH began his 'downward spiral' from being one healthy animal to being a liver transplant patient--and then a lot more health issues--we noticed that very few of our 'friends' stood by. Oh, they talked a good line, but they disappeared, one by one.

I wasn't really aware of it, but after he recovered from the transplant---we had nobody but our kids and a few 'good people' really caring about us.

DH has been able to continue working FT and will retire next year, when I turn 65. I think a lot of the people ditching us was the fact DH had HepC and they were TERRIFIED they catch it. Crap--he had it for 40 years before it ruined his liver and he did Harvoni and is now HCV-free. His own MOTHER refused to eat or drink anything made in my home, for fear of catching it. Sadly, though we tried to educated people (we had 5 kids while he was HCV+ and no worries) that it is HARD to catch, they just chose to stay away.

The few remaining friends as blessings to us, for sure.
Same thing happened when I was dxed with cancer last year. A LOT of immediate knee-jerk 'oh I'm so sorry' notes--and then, silence. Again, a very few people stayed the course. My angelic neighbor brought me (DH traveled about 75% of the time I was treating) dinner 3 times a week and brooked no 'that's fine, I'm fine, you don't need to do this'--she simply said "I cannot sit home knowing how sick you are and knowing you won't eat anything b/c it's too hard'.

Those kind of people are few and far between.

I KNOW I will be a widow, DH's health is not awesome, and altho I have had cancer and it will return one day, I have learned to live alone and not be a pathetic creature. My kids have their own lives and I want them to.

I'm learning to reach outside my comfort zone and befriend new people and not be content to sit around waiting for someone to 'show up' and be my friend.

This is NOT what I had planned--but it is what it is. It's taught me to be 'there' for people who are going through life, in good times and bad.

Wow, you hit the nail on the head! This disease does suck the life out of the caregiver!!! The last thing that I want to do is to go out and chat it up after visiting my mom all afternoon and crying all the way home. I am physically and mentally exhausted. Although many people say that to go out would be a healthy distraction, I just don’t feel like it. I do hear from friends less and less. At Christmas time one of my friends told me I have caregiver burnout matter of fact, and more or less said “ snap out of it.”
This disease has put my life on hold. I don’t make travel plans like I used to, because you never know what will happen if I go away. I don’t have the energy for home projects, so they are on hold. I do the basics, cooking, cleaning, and laundry. We don’t go out to dinner like we used to.
I don’t know what my life will look like after it is all over. Will I bounce back and pick up where I left off? Or will my life be forever changed?
I have been caring for my mom since my dad died ten years ago. For five years I took care of my mom as she lived Independently. I drove her to appointments, paid her bills, and did her groceries. Our relationship as a mother/ daughter/ friend began to suffer because I was no longer her buddy. In hindsight, her disease was starting to rear it’s ugly head. In 2015 she moved into assisted living and our relationship plummeted. I was called names, slapped, and treated poorly. But, I knew that it was the disease. In 2017, she was moved to memory care and the decent into the ugly world of full blown dementia was now part of our everyday life.
i am glad for the time that I have spent with my mom and I will have no regrets when she passes, but I wonder what my life will look like when the dust settles. Friends, social life, marriage, energy????

Friends are often uncomfortable with serious illness and death, and they may not want to be reminded of what's going on. You might find new people in caregiver or bereavement groups with whom you can share your new reality of navigating your world on your own. Other caregivers (or bereaved) understand and share your feelings of being alone, overwhelmed and disappointed that former friends have pulled back. You may also find your experiences and discoveries are helpful to others. Learning from each other helps us cope with the difficulties.

Friendships seem to ebb and flow as we go through our life experiences, illnesses, caring for our family members, aging parents, etc.. The friends who hang with us are few and far between. Some things I attribute to natural changes as we get older, fewer things in common, changes in physical abilities, people becoming involved in their own lives and issues. I don't know what the answer is but just wanted to let you know you're not alone. Hopefully you will meet and make some new friends through this journey. I have to say, I've made some friends at mom's memory care facility! I enjoy the time I have with my husband and try to live one day at a time. I've been dealing with mom for 15 years now with no end in sight, so know this can go on for a very long time. I always say take care of yourself, set those boundaries, be open to new friendships and live your life as much as you can.

midkid58 your story speaks to me. I think it probably speaks to a lot of us. You have a great attitude...yes, no one will just show up - that's the part we all have to do - just show up. I applaud your refusal to be a victim and to be independent. You have helped me today with your perspective. Thank you for sharing.

I think people tend to sort themselves into groups based on family/life situations. For example, when my sister and her husband had a child, a couple who had been good friends made the comment that "well, I guess we'll need to find another childless couple to be our friends" to which my sister answered "no, things don't have to change, we can still be friends".

Having an incapacitated spouse or other family member probably puts you into a different "demographic group" in the minds of many people, including your friends who now become more distant, and in addition, they might not really know how to relate to your new situation and feel somewhat embarrassed by this inability to relate--somewhat like the uneasiness one might feel when deciding what to say to someone who has just lost a family member.

On a somewhat different note, I shared an apartment with a friend whose mother had been unhealthy many years until she died at 62. For her a good year was one during which she didn't require surgery, but she was a real "fighter" who still managed to have as normal a life as possibly with her husband and two sons, and she was simply a nice, kind person, and one that my father would have called a "straight shooter". My friend told me that one time, she had been sick and away from her church for a long time, but when she finally returned, there was one person who gave her a dramatic "ohhhh, ...we MISSED you soooo much" speech, so she just came back with "yes..I could tell by all your calls, cards and visits!" after which the other person, of course, couldn't say anything in defense!

I’m not made from diplomatic stuff, so I’m just gonna say it. People that turn their backs on you when the chips are down aren’t real friends. Life is not always neat and tidy. Maybe you could seek out some activities in your area and make new friendships. At any rate you are right your life shouldn’t stop. There are many genuinely good people out there you just have to find them.. Much love and blessings to you both 💕

I see this from both sides, and want to offer another perspective.

I certainly understand that friends, and even family, may not be comfortable with or know how to interact with someone whose aging has reached a point of affecting her/his life.   In some cases, they don't know what to say, how to interact, and can be frightened with the knowledge that someday this may happen to them.  So they back off.

Others may offer support then withdraw when death occurs.   Although I had good support during this period of my life, I realized after my father died that one person who offered valuable support (a)  could no longer do that b/ in her mind the need was over, and (b) she could no longer give me advice.    

It took years for me to recognize that her help was intermingled with her advice, which was good, but she needed that, and I think when my father died she no longer felt the need to continue the friendship as it changed the dynamics in a way that wasn't beneficial to her.


Joycee, you'll need to reach out and find other friends.  Granted, that isn't easy, but there are other groups, and over our lives, our friends come in and often fade out, so it's not a consistent support group all the time.

Have you made efforts to meet others through your Senior Center?   What do you enjoy doing?  Reading? And if so, libraries have book clubs, and sometimes there are clubs focused on specific authors (such as Jane Austen).  Did you garden?  Even if you don't and still enjoy, localities often have garden clubs.

Libraries also offer lectures, movies and programs.    I search out the more upscale libraries b/c their programs are more interesting and informative.   You can interact with other attendees, or not, but at least you're out of the house, seeing new vistas, entertaining new thoughts and sights.  

(Two cautions are (a) with dementia, new locations might confuse your husband, and (b) if sundowning is involved, make sure that you're home early in the afternoon.)

One event my father and I rarely missed were the free performances sponsored by communities.   Saline Fiddlers is a very dynamic, high performance, group of teenagers who play foot stomping fiddling music in a variety of genres, just just Blue Grass.   They perform usually twice each sumer in communities that were close to us, so we attended those. 

Interestingly enough, the people clustered closer to the stage were elders, including a few in wheelchairs.     Children were right at the base of the stage, dancing, twirling, and creating their own performances.  Just seeing and feeling the mood of a crowd listening to well played music is uplifting in itself.

During the summer other communities in my area offer free concerts.   You can attend those by yourself and enjoy the benefit and uplift that music brings into people's lives.    Some churches also offer free concerts.  You may go alone, but you're with people, so you truly aren't alone.

Is your husband a Veteran? If so, check out the VA website (or let me know and I'll provide links), as it's expanding its outreach program for Veterans.  And it offers support for caregivers.

Hospitals in some areas offer support groups, including for dementia.

What were you and your husband interested in?   Search online for groups and clubs in your area, and seek them out.

One of the most important lessons I learned from my mom was "do unto others as you would have done unto you."

When a dear friend was dying of brain cancer I was the only "friend" who kept visiting. When another friend had breast cancer I was one of few who kept visiting (others returned after her treatments ended) When a co-worker lost her job I made a point of calling her every week to say hi. It’s what I would hope a friend would do for me.

Now with Mom in AL and sliding into dementia it’s hard not to feel bitter towards friends and family who no longer keep in touch. I understand that it’s scary for some people to visit the elderly and see the mental and physical changes. Maybe they have had a bad experience in the past. But still, call me and ask how she is doing, send a card or pictures, call to say hi, ANYTHING to let her know she is not forgotten. Even her minister has quit visiting.

I have been trying very hard not to guilt her in-laws, grand children, great grandchildren cousins, nieces and nephews into some sort of contact but it is so difficult. Mom is always asking if I have heard from any of them but honestly they don’t even contact me to ask about her.

I can guess what my future holds if I become old and feeble.

If you were wondering if your “best friends “ were true friends, now is that time to find out. If they all seem to flee when you’re in trouble...you know the answer. Unfortunately, this is the ugly truth. But the good news is you’re not alone as 99% of people who are caregivers on this site are experiencing the same thing. We are here for you! Vent away...Hugs 🤗

Caregiving is very hard and stressful and consumes your life. I centered my entire life on a fragile, fail confused old person who meant--and still means--everything on earth to me. My mom was my entire world and I lost her. Her death impacted me severely I lost so much weight you can see my bones. I been through caregiving for 15 years, and mom died age 90. It got so bad mom needed a feeding tube. I did this so she would not have to die of dehydration, which can take weeks. Dehydration, even with hospice, is slow and agonizing. So I got the stomach feeding tube and she did great with it. Ironically she did not die of Alzheimer's. Cancer got her. However, years and years and years of caregiving decimated my savings and life. I am barely able to pick up the pieces, and it is not easy "starting over" at age 60. I may never be able to retire unless I die.

I once had someone I considered to be a very good friend. The very moment she heard my father was dying, she stopped calling, texting, emailing............poof, she was gone, never, ever to be heard from again! Dad passed away 5.5 years ago.

To this day I am shocked to know that when I really NEEDED a friend to lean on, she vanished.

I guess some people show you what they're truly made of when the chips are down, huh?

Dear joycee: It is sad that people start to avoid you. And why? Because perhaps they don't know what to say. Then you have to wonder if these people were actually true friends at all. Prayers going out to you, dear lady.

I sometimes wonder what really is a “good” friend? I have never felt close to any friends I made when I was married and socialized as a couple. They were friends by “default” because most often, they were ppl my husband made contact with, not that I would have picked out of a crowd.

I don’t remember having any meaningful conversations with them, I certainly never unburied my soul to them. I wouldn’t have asked them to watch my kids for me. I didn’t really have a lot in common with any of them.

Now, I’ve been single for a while and a caregiver who rarely leaves the house. The friends I’ve made I can count on one hand, but they are more valuable to me and know me much better than those that came before, and I feel blessed for having them.

They visit me to enjoy the deep, thought provoking conversations we have and share mutual interests with me. They are here when I need help with mom or to take her things I’ve forgotten (for example). Matter-of-fact, they love mom almost as much as I do. (Although they choose not to take sides in our squabbles lol).

I don’t miss those old acquaintances any more than I miss that “old” husband. Or anymore than I miss my old high school friends, tbh.

Friends come and go, as do our interests and demands in life. We have to be able to go with the flow but also accept our own counsel and not be afraid to be alone.

charlotte

I learned very fast when my mom was bedridden who her and also my friends were and were not. One "friend" disappeared for several years when my mom was declining, yet after my mom passed and I sold her home, this person asked to borrow money! I did not answer her email and have not heard from her since. Good riddance! Same with others when I had a retinal detachment. Then I had a second retinal detachment in the other eye.....same runners, though I had operations and can see again. These cowards and "good time Charlies make me so angry." I see them as weak. I have really learned who my real friends are and are not. This is not your fault, it is theirs as they are weak and shallow people.

I thank everyone for their replies. If you never walked down this path you would not know how difficult it is. Its 24 hours a day...and neverending and you can always count on it getting worse. I had a "friend" call me yesterday to say that they would not be going with us to the monthly dance. She said her husband wanted to sit with the guys...His friends...I told her my husband is still a guy and I would make plans with people who would accept him as he is. I am being to make waves and saying what I think. I could care less. I have taken myself out of situations that were not good for us and with people who only care about their next party and whiskey. I feel like saying "you bunch of shallow fools" but I dot. Expect nothing, you will never be disappointed. Karma has a way of coming around. We all have problems and they will have theirs. Only then will they see how inconsiderate they are. Shallow people with no empathy....no not for me. They have a sigh of relieve when I am not around. Our only option is to clean house with friends, if they drop us, one less to worry about. Seek out people who are caring and understanding. Might not be many, but you only need one really to care. My husband has been thru heart attacks, bypass, cancer, etc....This is by far the toughest thing for me. Do not ever expect people to do what you would do in a situation. You maybe kind and giving, do not think others react the same way. I was always thei giver, the parties, the food when they were sick, the person who picked up the dance tickets, the person who held party after party, birthday club, whatever. When husband got sick the circle got smaller. In life if you have 2 or 3 good friends....you are a success. The rest are just around for fun and games. Fortunately form e, my son 57, retired from his job and is spending 4 months with me in the spring, then my daughter will fly in for a month to give him a break, followed by another son. I am blessed in that way. I wont change who I am to be bitter and angry. That is not who I am. I will continue to be the person I always was. Once be react in a hostile way, then we become them...I cherish the great times been married 58 year. But to see a brilliant man eat his food with a toothpick or put salt in his coffee would make anyone cry. So we few who suffer can still learn a valuable lesson. We are still here and life goes on. And its our choice to engage each day and find some joy. You just need to look for it. I guess you could say we earned our wings to Heaven someday. My sister passed away at a young 53 she was the kindess human being I knew. And I told her she was so wonderful and was going to Heaven. She said well if I am that good, I guess I'll take the escalator up there! So until we take that ride up there...lets all find one little joy for today. For me it might just be a cup of Starbucks coffee...thats a start...............thanks to all......

A person may say "Is there anything that I can do for you?" I have seen this time after time. Instead why not just show up with a homemade dish of food? When I was living at my mother's out of state and alone when she was in the hospital, her church members just showed up with homemsde food for me!

I understand your feelings and frustration, and my comment may seem cruel and insensitive. Yet, it may help you to understand your "friends" better. When you see your friends, do you over share your burdens with them?

When I am over stressed about challenges in my life, I find myself dumping my feelings and problems on any shoulders I can find in the hope that someone with more strength and knowledge can help me handle my burdens. However, this places my friends in the position of being not only my friend but my fix it person. Some of my friends can handle this and some simply feel bad about themselves because they know that they are out of their depth. I need to continually remember that when my friends ask about my mother that I keep my answer simple and short. They do care, and they really want to be there for me. Yet, the reality of actually knowing how to help and helping with time or money or effort is quite a burden that not all of my friends can give comfortably. This creates a bad feeling that my friends get when they see me because they know that I am in need and they can't comfortably help me. I start to become the sad sap burden instead of the happy friend they knew and liked. My friends and your friends are probably the same in that respect. They are simply good intentioned people who care but cannot give you the help and answers you seek so they avoid you. I always remember the adage, "Advice is cheap and labor is expensive." It is a hard reality, but true. My prayers are with you.

Tough times ! Bring silver linings when we least expect it.
Follow your heart keep it strong so your soul doesn’t get damaged . There is peace you will find it ...within yourself .
People have their own stuff and most don’t know how to reach over many just reach out.
Everyone’s advice to me is to take some time for U !
i took this advice it helps a great deal...which makes it better for the one you care for.
Good luck ♥️

Joycee1 Your comment is about the most honest thing I have read in a long while. I have been taking care of my mother over 6 yrs now. 94 yrs with dementia. You hit the nail on the head. It is a very lonely job being caretaker of someone with dementia. Friends and family scatter like you have got the plague. All are concerned from a far. I wish you rest when you can get it. I hope you can find some humor to enjoy in the tragic events that you see and feel every day. And I hope you can survive physically and mentally so that once your journey is over, you will find the peace you so rightly deserve. Never forget you are Wonder Woman!