Many of you have already had loved ones pass away from dementia, Alzheimer's and various other diseases, but you are kind enough to continue to give us the benefit of your experiences on this site, so......
May I ask you all a few questions?
I am concerned about how I am going to react when Mom passes away, I have had problems with depression and panic and anxiety in the past.
I care for my 85 yo mother and I do not see her passing away for several more years. When my father died in 2006 I thought we would be lucky to keep Mom alive for 3 more years, but 8 years later she is still going although her dementia and effects of medications for it, are gradually taking a toll on her and unfortunately myself, my daughter, and my siblings.
I know that for many of us the stress has been so great for so long, that in a way we look at death as a release or relief that is natural but we feel ashamed to admit it. Many people seem to curl up and pull away from life as they grieve and some never get past it. I was wondering if any of you that have gone through the death of your loved ones and you look back on it now, is there anything you wish you would have done differently? Is there anything you might have done during the time you cared for them that might have helped you more both then and now? Did you figure this all out beforehand and do things to prevent falling into deep grief?
I am asking because I am the 24/7 care giver who is under enormous stress with little to no help at all from siblings. They work and I am on disability therefore the care giving was just a "given" in their book that I should do, because I am home. I have done it for 8 years with Mom and now my panic and anxiety has begun again because I see my life slipping away (61) and my daughter is graduating from college and beginning her life..... a life I have missed out on due to caring for both parents, an aunt and brother in law as well as being ill myself for the past 17 years.
I can see myself becoming more depressed when my mother dies especially since I already feel like I have Post Traumatic Stress Disorder at times from what I am currently going through. I look at my age and wonder if anyone would hire me to do anything, I find myself passing pre schools or other businesses and wondering, "Would they even let me volunteer?"
I need to "head this off at the pass" if there is anything I can do NOW to help save myself when Mom is gone. Although I am sure I will feel relief, I am also sure I will feel lonely, at loose ends, and just plain old "lost" when she is gone, because my every waking moment is spent running to meet her needs and the needs of this household.
I had thought that perhaps leaving the house now, to take a class or visit a friend on a regular basis would help, even getting some type of part time job, but to do this I need the assistance of my family, which is not coming. As a matter of fact my older sister who lives with us stays at work 4 hours past quitting time (she works part time), so she does not have to come home and help deal with the issues of Mom. My therapist tells me I MUST leave the house each weekend and go do something fun with my daughter or a friend for my mental well being, however this same sister, has told me I can no longer leave the house, without her permission!!! My reply back to her was not a nice one! She has no right or authority to try and keep me at home, this is a jealousy issue. But it gives you an idea as to what I am up against.
If any of you could or would give me advice I would appreciate it. I feel like I need to begin "putting on the life jacket now, to prevent myself from drowning" later on.
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When we are caregivers, our priority is clear. The question you asked is a GREAT one. I encourage you to plan ahead, by developing interests and circles of friends now.
Those will be a comfort to you later. I heard someone say today, if you are struggling ... with depression, indecisiveness, etc, etc --- do something, anything. Take action... take a first step. Get out there.
Good for you that you asked this question. Make your bucket list. List all the things you think may be fun to do. Go on line and look around. There are all kinds of free learning, offered now on line from great universities like MIT, etc.
Start reaching out now. Look for joy. Even in our greatest challenges, there is a silver lining in there somewhere. Keep looking. You will find it.
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God bless an keep you strong.
Went to bereavement group at Catholic church in my neighborhood, even though I'm not Catholic. It was very helpful for me. Others said it didn't help, so I think its a matter of how open we are to the 'help'. When it was over, I wished it continued.
So, I keep coming to this site and hope to help others with my experience.
Signed up for exercise classes. Community classes are very inexpensive and they are populated with people over age 55 and everyone is lovely. The workouts are gentle.
Joined a gym where it's populated with much younger people and everyone is very friendly. The workouts are challenging and I just do my best.
Yoga, gentle/therapeutic level only. This helped me relax and think about my sons.
Now, it's a year and a half later and I've signed up for community school classes. Drawing, how to keep resolutions, healthy cookies was not so healthy, but I will keep trying to find interesting things to learn.
I go to everything the library offers for free, particularly in the evenings.
I joined all three book clubs at my library. I don't always like the book choices, so I am looking into the book clubs at other libraries. I have read stories about North Korean prison camps and suicides and murders, but have decided to only read books that are GOOD!, healthy, up beat, positive, constructive and teach me something amazing about the world.
All this is a long way of saying, my family and friends who are still working and have young families got tired of talking about my Mom very fast. It was helpful to get out of the house, to move my body and to read and to stimulate my mind.
Life has moved on. I still miss her, but I'm happy that she knows I loved her and that I took good care of her until the end. Her words stay with me and she is in my heart and in my mind. I'm blessed with good memories.
However, as I've gotten older it has become increasingly difficult for me to stay healthy, so I have to get up and get moving Every Day!
When I wake up in the morning I say, "I'm lucky, I'm lucky, I'm lucky." I'm lucky for the challenges that have come my way, because they are a puzzle for me to solve and I am lucky for all of the blessings. I'm lucky that the sun shines and I'm lucky that the rain waters the flowers that will come in the spring.
I wish you lots and lots of luck and blessings as well. I am sure you will find them all around you if you just keep looking for them and as they say, keep moving forward.
My advice to you is do the best you can but the most important thing is to take care of yourself first. You MUST have an outlet because it puts things in perspective. There is only so much you can do and give of yourself. I had a couple mini nervous breakdowns at the end of my care for her at home. Finally one day I just knew I had to put her into care because my own health and family was suffering to try to take care of someone that needed more care than we were capable of giving. Don't beat yourself up and don't get depressed.
Looking back you ask what would I have done differently? I would have given mom more of my personal time and not been so selfish. I would have put her into care sooner for her and I both and not felt so guilty. I would have loved her more and tried to be quick not to anger. I would have imagined myself in her position with end stage dementia and not knowing what was happening to me and just looking for a trusted face to know that I was cared for and loved. I would not beat myself up with guilt for not being able to do it all. I should not have let lazy siblings who tried to control my life get to me. I would have been the strong woman my mother was and whom she raised the same way.
Be strong and accept that when she passes she is so much better off. I cried very little when my mom died because I knew she was so much better off and she didn't want this earhtly life anymore because the life she knew was stripped away from all of us by the dreadful, debilitating disease of dementia.
Blessed are all of us who have the opportunity to take care of those we hold in our hearts always. You will look back and feel so good that you chose to take care of her and did your best. Hopefully at the end of our own lives someone will feel that way for us! God Bless and Good Luck always......
(All of us need to do this, if I could only practice what I Preech )!
Lost my mom when I was 29, she was only 56. Lost my only brother when I was 24, he was only 31. My dad when I was 14, he was 42.
(and a ton of others as well ).
Now in my 40's trying to "practice what I'm preaching", easier said than done, but I am working on it
What I do "to cope" with them not being around anymore, is imagining they are all on vacation .... And I missed the plane! But one day, I'll catch my flight, but not right now ".
First ask your very young self (61) which you are...."What things do I enjoy/like"? baking? crafts ? Children? Think hard on things "you really enjoy".....Because you need to go do them when she does pass.
(Shell be ok.....and shell be the mom you knew before her illnesses , so feel comfort on that )!
But you must "finally" take care of you :)
And do what I'm telling you...."Go take classes , volunteer at schools/hospitals , join a craft group, gardening , etc" whatever it is you enjoy Hun ......"You need to live your life, and your mom, she'll be "whole again"....and you'll see her one day, "you missed the plane you'll catch up when your suppose too, but not now....time to live life for you for awhile "!
(They are never far once they pass.....so never fret on that)!
I now am on my last parent (father in law....toughest one yet, memory going /cancer/diabetes/etc ).....but "darn it.....I wanna take classes, and do a ton of other things"....and trying to focus hard on that .
"All of you caregivers must do this as well"!
So...."start thinking on everything you love to do or want to do, and start looking into how to do them & get yourself semi ready Hun" :)
Blessings to all of you !
To me, this is a symptom of an underlying condition of allowing your mind to dwell on and dread the future. You can't control what happens any more than you can go backwards in time and change past experiences about which you also may be obsessing.
Actual, unpredictable future circumstances will determine what to do.
Meanwhile, learn to live in and give thanks for the current moment. Live your best life right now because that's all that truly exists for any of us. God bless.
I think your best preparation is to get yourself as healthy as you can now. It sounds like you are seeing a therapist. That is great! Continue that, and do your best to follow the advice that makes sense to you. (Get some in-home help! Get out!) Get your panic attacks under control now. Treat your depression now.
Remember that grief is not pathological. Grief is normal, and it gradually diminishes. Our caregiving situations are not "normal." and our grief is apt to be complicated, too. Continue to see your therapist after Mom dies. Don't expect to avoid grieving, but talking to a counselor can help you separate normal grief from anxiety and depression which need treating.
(I'm saying these things based on my own experiences. Yours may be different.)
I had a long list of things I wanted to do again after I was no longer tied to caregiving. In the year since my husband died I did do many of them, but not nearly as many as I expected to do. Partly that was for lack of money, and partly lack of energy. I'm glad I did the things I did do. It isn't all-or-nothing. Give yourself time to get back into a non-caregiving pace of life.
I feel like I was recovering from two things: the death of my life partner. The loss of my purpose and focus. This takes time. Don't let anyone pressure you or bully you to recover at an uncomfortable pace.
With Mom it is going to be different because I have personally invested so much time and work and it has gone on for so many years..... I am afraid of losing myself to depression because there is nothing to fill the gap. You had work to return to, which is something I wish I had at least part-time. I have that feeling that I need to get myself set up with something or some place to be able to turn my attention to. It's not that I do not want to grieve her, but I do not want to lose myself in some despair that will only keep me from living what is left of my life.
I am sorry that you missed seeing your father that night, but I am very glad to know that you did not let that thought overwhelm you, but accepted it as this is the way it was meant to be.
A young woman I worked with had her father in the hospital dying from AIDS. He just kept hanging on and she did not know how he could. She found out he was afraid to die since he was Catholic and homosexual and felt he would go to hell. His brothers and sisters had not come to see him either. She got a Priest to come and give him his last rites and asked his family to please come and see him so he could be at peace, which they did. As they were leaving she walked them to the elevator and thanked them all for coming, when she returned to his room, he was gone. He was ready, he had said his goodbyes, and I Love You's. She had been with him every single day for 3 weeks and in the matter of less than 10 minutes he was gone. I think he chose that particular time.
Theresa911: Wow the relationship you had with your MIL was fantastic. I hope your husband knows what a special woman you are!!!!!!!!! I absolutely love the fact that you drove over to make sure her makeup and hair were nice before she was taken.....what a blessing you are!!!
You are right about the emotional and mental stress being the worst. I am sure that is why my panic and anxiety has begun again, I have reached the end of my rope. I am in the process of checking with agencies and organizations to find some in home help, so I can leave the house on a regular basis without having my older sister "rake me over the coals!"
Thank you both again, I greatly appreciate hearing from you!
While I cared for my dad and while he was in the nursing home I wanted to make sure that after he died I would not have regrets. I did the same with my mom but my dad was more recent so that's why I'm talking about him and not my mom.
We knew my dad was dying. He had lost his mind and was on hospice. The last week of his life I took off work and was with him everyday. The day I went back to work, a Saturday, I worked 12 hours. It occurred to me to stop off at the nursing home on my way home and see him but I didn't. I was tired, I had been there all week and I had another 12 hour shift scheduled the next day. After I got home I grabbed a quick shower and called the nursing home to check up on him. I was told that they were getting ready to call me. He had died half an hour ago. Had I stopped off to see him I would have been with him when he died. I guess that would horrify a lot of people but I know in my heart that I did everything for him that I could, that I needed to get back to work after being with him all week, and that things happened the way they were supposed to happen. I guess I could have used that to beat myself up over and over but I haven't.
As for how it's been since he died? I'm not ashamed to admit that there is relief. Things were so bad for him at the end and the stress was unimaginable (meaning I could have never predicted that I could experience such stress every single day, day after day). So yeah, there was relief. After all the arrangements were made and everything like that was done I was numb for a while. Yes, I missed him but as I said things for him were so bad at the end. I didn't really go into a depression at that time as I expected I just carried on with life and it was a new life because I had been my dad's caregiver for so long. When he went into the nursing home I moved from the house we shared and got a job so that stuff was already in place and I just went on without him. But each time I think of him I get a pain in my heart. An actual pain in my heart. And when things aren't going well in my life for whatever reason I think of him and I miss him so very much. He was a good, good man and had always been a wonderful father.
As for what you can do now to make the landing easier for you I can't imagine what there is to do. Some of us grieve while our loved ones are still alive. I know I did but it wasn't the same as when he died. If there was something that could be done I think everyone would do it but we have to feel it. We have to go through it. There's no way around it but right through it. Sometimes I miss my dad more than other times and at times, for whatever reason, that grief is right there at the surface, even after all these months.
Just be a good caregiver, realize that you're human and that you're not perfect. Make choices that won't come back to haunt you later. That's all I can tell you. Just do right by your mom and you won't have any regrets. And if you find yourself with regrets after she's gone be realistic. Looking in the past at our actions isn't always reliable. Don't get into a whole self-pity thing. Be reasonable. Do I wish I had stopped off at the nursing home on my way home from work the night my dad died? Absolutely. But I didn't and I had no clue he was going to die that night and I had been with him almost 24/7 for a week and I had to get back to my life and that meant getting back to work. That's life. I don't beat myself up about it.
Just be a good daughter and I think you'll be fine. It's ok to be sad and it's ok to feel grief and it's ok to be depressed after a loved one dies. 10 months later and I cried like a baby Friday night over the loss of my dad. It's hard. But we all have to go through it.