Welcome to CareNotes. In this
special section we will feature a reader's letter and provide an opportunity
for an interactive exchange that will help find some answers and possible
solutions to concerns. If you wish to respond to this letter, simple
follow the link provided at the end of the letter and add your comments
and thoughts to our CareNotes Board.
Name: Patricia Hilgendorf
Location: North Carolina
Time: 10:39 AM
I completely understand all of the feelings you are having and they are real. One of the downsides of caregiving is that many people who haven't been in that position, tend to drift away. That can include family members. They say that they can't "handle" it. It's hard to accept, but you have to, and start making other plans. Use the respite time you have to find something you enjoy doing and maybe find a way to join others with the same interest.
One thing about your friend and his reaction to his father. I think most of us have had those thoughts of "euthanasia" when we felt overwhelmed watching our loved one fade away. Realize how upset your friend is about his father's condition and try to forgive him for being rude. He is hurting too.
Do you journal? I find that is a terrific way to get my feelings out and not keep them spinning in my head. Give it a try.
Hang in there,
Name: Robert M.
Time: 10:48 AM
I understand how you feel as I am in a similar situation. Nobody comes around the house any more because of my father's advanced Alzheimer's Disease. Even a couple of my brothers have made themselves very scarce leaving all of the work to my sister, brother and myself. I feel like an indentured servant. There are many caregivers in this boat. You are not alone.
You should not just repress how your friend has made you feel. It may be that he is emotionally immature and feels uncomfortable around people who behave outside of his norm. You should tell your friend how shocked you are at his insensitivity and how you hope he can understand how it hurt you. Ask him to try to understand your situation. It would help if you could address him face to face.
Keep in mind that dark humor is a coping mechanism that more than one person has used to relieve some stress, my self and my siblings included. Sometimes, its the only humor I can find in my situation. It doesn't mean that I care any less about my loved one anybody else. (except maybe politicians) I just like dark humor.
Time: 11:46 AM
It sounds to me as if he feels guilty about his father's condition and perhaps that's why you were invited and not your mother. He sees that you can handle the situation but deep down he doesn't think he can handle his situation. I wouldn't worry about him, let him go. God is the only one who can help him now. Your decisions are your own and his decisions are his own. You don't owe him an explanation about why you don't want to talk to him. Your a busy person and you have responsibilities. That statement should keep him from calling you again.
It's difficult and I know how difficult it can be for you. My husband has Parkinson's Disease and I took care of him for 17 years before putting him in the nursing home he is now. I lost all our friends many years ago. I used to feel so alone but had to remember that God had a plan for me and maybe some day I'd figure it out on my own.
I don't hear from our old friends and I don't even hear from his relatives (brothers and sisters). I figure they have a lot on their plate and so do I. If I do what I'm supposed to do then I've cleaned my side of the street - so to speak.
Take care and I will add you to my prayers. No one knows what we go through except another person who is going through the same thing.
Location: South Carolina
Time: 11:48 AM
When my mother was first diagnosed with dementia and had a massive heart attack, I was thrust in the role of caregiver. Mother and I weren't particularly close and yet I was the only one she had.
I also have a mentally challenged brother. I felt angry, overloaded and overwhelmed. Your male friend needs time to adjust to all that is going on around him. It took me some time to actually step into this role without all the negative emotions that initially came with the job. It may take some time for him to adjust. It is also normal to feel that it would better if they died or were euthanized. I know I would not like my loved ones to have to take care of me in the same position, so don't fault his feeling.
I also found my circle of friends did change. It is hard for some people to be around us when we are depressed or obsessed with our loved ones care. There isn't anything wrong with that either. Everyone is at a different emotional or spiritual level and I have learned to accept that and honor it. Not everyone can give us what we need emotionally or spiritually. I am now so grateful from the circle of close friends that are a great support. We support each other in so many ways. Many are a lot older than me and many a lot younger from all walks of life. I feel my life richer by opening myself to new friendships.
Location: Oklahoma City
Time: 12:06 PM
It sounds to me as if you need to have a heart to heart with him and tell him--nicely--how you feel by his not inviting your mother. Write him a letter you will never send in order to work out your anger or better yet see a counselor. Read up on assertiveness and practice what you want to say to him. I suspect he feels uncomfortable around her, as well as his own father, and doesn't know how to handle it. So not inviting her is a way to not deal with his own feelings.
Time: 01:32 PM
You can not change other people. They have their own valid reasons for what they do. Perhaps your friend is following the directives his father had. Many people write a living will in which they state that if there is no cure or hope, they don't want to live. Your friend could also be his health care proxy. He is legally obligated to carry out his father's directives. He may also have a durable power of attorney and would then have control over his father. Everyone should look into those three documents in order to control end of life decisions.
Seeing our patients is very difficult to many. It reminds them of their own mortality. Not everyone can handle sickness and death.
You need to find different friends and get help for your mother and yourself. I can not say this more strongly --- Join A Support Group Now. You can not do this alone. Check with the Alzheimer's Association for a group near you.
Location: Hemet, CA
Time: 03:40 PM
When you are caring for someone with memory loss, whether Alzheimer's, Lewy Bodies,
Vascular, etc, there is a multitude of tiny losses surrounding the one you care for every day. You tend to recognize this as a fact of caregiving life. But when one of your "normal" friends presents a loss, it isn't in small increments. It is major. It comes in one large dose. There may or may not be warnings. For me, survival as a caregiver (I am now a retired caregiver) has meant being able to respond to loss by recognizing we all have our limits and our infirmities. If someone no longer can help, we have to give them the freedom to say no. It just isn't easy
Time: 05:14 PM
I have been a caregiver for ten years, both for my Dad and my Mom. Dad passed in 2000 and Mom just passed May 9th of this year.
The reason I am answering your carenote is to let you know that it very well might be that your old friends and acquaintances might be acting like they are because they don't understand how hard a caregiver's life is. They can't imagine how your life has changed and especially don't understand how you can do what you do at all.
My husband and I retired to SC and had to take both my parents with us. Circumstances warranted that we all move, but we did have our own home right next to theirs. Down the line that was a very good choice as we were both able to have time to ourselves. I mention this because I did not have any friends in my new location. I met a woman who was to become a best friend at age 51. It is odd to meet someone you can be close with at that age. We have the same name, Susan, but she is ten years younger than I am. There are a lot of similarities in our personalities. Her Mom and my Mom were roommates in a nursing home. That is how we met. After my Dad passed in 2000, Mom just collapsed and she had to go to the hospital with ulcer problems. When she was released, I had to put her in a nursing home until she was able to build herself up again. She was there for 18 months and then we took her home to her own house again. I spent five years as Mom's sole caregiver.
Mom and I were very close as I was growing up, but nothing compared to how close we became during those years. I was the one she looked to for all decisions that we made, etc. The time I spent and the things I did with and for Mom, I will never regret. I harbor no regrets and I also don't have any guilt. Along the way I did feel guilty at times, but I worked through that with counseling.
Mom died just shy of her 95th birthday. I miss her so very much. Time is what I have now and I ask myself what should I do. There are many hours to fill and so many happy and sad memories to feel and file so to speak. The grieving process is very difficult. I had hospice for Mom and they were my angels from heaven. Mom passed in her own bed at home with me sitting next to her. I was afraid to do this as I had never experienced all the emotions that I would feel. My Dad had passed in the nursing home.
God has a special place for all caregivers. I have been called an angel, a selfless person, and such a great daughter. To me I do feel that way, but the real and only reason I took the job as CAREGIVER, is because I loved my parents. There is no better reason. And I think if that feeling isn't there, it will be much harder.
I feel that you are a very loving granddaughter and you will be fine. I would love to be your friend. God will not give you more than you can handle, and if it becomes too much on some days, HE will help you along....let him. God bless you.
Time: 05:20 PM
When I checked my answer to your carenote, I noticed that I referred to you as "granddaughter". Upon reading your note again, I see that you are the caregiver for your Mom. I am sorry I didn't get it right the first time. I hope I have been a bit helpful.
Name: Tina H. Lapres
Location: Lake Forest,, California
Time: 11:24 PM
First of all I'd like to commend you for the noble work you are doing
on behalf of your mother. I suppose you have no other sibling to help. I was in the same position many years ago, though I have several sisters and brothers. I fully understand how you feel. Caregiving can be difficult and at times, depressing. But your innate love for your mom will see you through. As for your so-called "friend", your feelings are understandable and quite normal. It's only natural that you will be disappointed as you prob ably thought highly of him. Obviously, though, you two have different ways of looking at things where your loved ones are concerned. Try not to let his present attitude affect you too much. And remember, prayer helps. Bless your "friend", even as you turn to the best possible friend we can have, our Heavenly Father. Then you'll never be alone. Good luck and be strong. By the way, I, too am a caregiver, taking care of a 93-year-old American lady for five years now.
Location: Pondicherry, South India
Time: 11:42 AM
By the time I saw this you had already received a lot of good and caring advice and maybe that in itself is an indication that you are not as alone as you had thought.
I agree that your friend is overwhelmed and avoidance is his coping mechanism. Many of my parents' friends stopped visiting when they found seeing their old friends helpless and demented was too depressing. The ones who lived nearby in Florida would invite me to visit them if I had some free time but they didn't want to come and see Mom and Dad.
Even today after Mom's passing Dad's friends don't call much because they would I think rather remember the man he was than the person he is now.
Being a caregiver makes us a part of a bigger family and part of the only real solution to one of our society's major problems. I understand some of what you are saying from my experiences
and I think maybe the best way to respond to your friend is to let him know that you understand he is trying to cope with a situation that he can't handle but that he hurt your feelings deeply.
Friends are worth keeping, no?
Name: Deanna Pullen
Location: Des Moines, IA
Time: 05:28 PM
How hurt you must feel as you lose what you thought was a soul friend, especially when other friends have already abandoned you. Your relationship with your mom is such a gift to her, and, I believe, a gift to you that you will treasure long after she is gone. My only hope is that he will learn from you how to love in a new way, to support and care for his father. Don't spend too much time trying to save that friendship; it would seem that his priorities and yours are very different. Your mom did a good job raising you!
Location: Washington, D.C.
Time: 03:05 PM
Hi...I first want to say I am so sorry that you have had to deal with such an ordeal.
One of the first thoughts that came to my mind was perhaps his partner might have something to do with his reactions. I said this because I have a friend...and yes I will call this person a friend...and my friend began reacting very differently to me when she became involved romantically with someone. Unfortunately at times our friends drastically change from the influence or pressures placed on them if their partners do not agree with something concerning the friends they had before the relationship. I don't know that this is the case of your friend...but it was what came to my mind as a possible reason but definitely not an excuse. Also your friend might just be having a difficult time dealing with the reality of his own situation concerning his father and your mother is to him just a bad reminder.
I honestly think in this case the best thing you can do for yourself and your mother is to disconnect graciously. Caregiving involves the need for positive support systems and I tell anyone going through the caregiver experience...if it is not something that can bring something positive to your world...you don't need it.
Maybe, in years, if fate allows, because we don't know what the future holds, when both of you..yourself and your friend are at another phase of life...you might have the opportunity to revisit it...but for now...I don't see the importance of trying to understand...my mom always said...stop trying to make sense out of nonsense.
I hope this helps...stay encouraged and keep doing a great job...my mother is 81 and I am her sole caretaker and I can related to wanting your mom to stay as active as possible...so just be sure her interactions are always ones that she will enjoy. Take care...God Bless
Time: 05:52 AM
This is not unusual whatsoever. Often those who have not experienced this situation have no idea what to do. Until you have walked in a caregivers shoes, you really have no clue what it is like. Many times friends and family stay away out of respect for you to handle your situation with dignity ... as it is a private matter. You cannot judge others reactions, we all have different tolerances with regard to illnesses. I found it was so natural for me personally to jump in and be primary caregiver for both my parents, it is what I felt I was meant to do, but others it did not come as easily. I felt privileged to have had the experience and never resentful. There is no score keeping. We all give and do whatever we are capable of. It is helpful for you to be tolerant of others and forgiving because they don't always realize what is best to do.
Location: Washington, DC
Time: 10:41 PM
I want to thank each and every one of you who took the time to respond to my "carenotes" post. It is so incredibly helpful to see, in real words, that there are others going through the same issues as a caregiver. No, I would never trade what I am able to with and for my Mom for anything. And the insights on "why" my friend might be reacting to both his own father and my Mom are very helpful and have given me much to think about. Thank you, my "caregiving family" for your support and insightful comments. I wish we had a means to set up a "community chat" .... I would love to respond individually to each of you, because every word I have read has touched me and made me not only more determined in my caregiving role, but also more understanding of where my friend might be coming from. Thank you for your supportive words, and for the helpful and thoughtful advice, recommendations and comments. I am SO grateful for this community of caregivers! All the best, Susan