...I actually considering calling a crisis line yesterday. Never in my life have I even had a thought about doing so. As you know my husband is in a facility with FTDbv and has been for almost four years now. His delusions and paranoia run his life and it is beyond tragic. Still hitting and cornering other residents and staff. My sister (age 54) took her life in July. My 90 year old mother (who lived with my sister) has attempted suicide twice in the last two weeks. She is now on the same geriatric psychiatric unit my husband was on for months at a time. She also has dementia. I am dealing with the same social worker. Geish! I plan fun things for me sometimes trying to maintain some semblance of health. Tonight I was going to a murder mystery. The last two days have been filled with phone calls with lawyers, doctors, and a social worker concerning my mother. Yet again. as a result, my energy levels are zero. I have cancelled my plans for the evening. Every single time I plan something for me, a crisis of my husband or mother takes place. Every single time. I used to have strong resilience and energy reserves but dementia has robed me fully. Rather than the crisis line, I am turning to my friends here. Thank you sincerely. This site and all of you have kept me sane (somewhat).
Glad I saw this...was just going out for a quick walk. Katherine, it is so unfair and unjust, but unfortunately family disasters do often seem to come in multiples. My mother and Larry both died in 2014, and one thing that drove me crazy was that I couldn't discuss the loss of my mother with Larry...or the loss of Larry with my mother...because they were both gone. And my brother Mike, one of my best friends in the universe, died at age 57 in 2011. So often after the loss of Larry and my mother, I wanted to call Mike and have a long dishy, gossipy discussion about them...and of course he had already been dead for three years. I'll take a long deep breath and reveal what most people don't know: Mike committed suicide. We usually just tell people, "Oh, it looked like a heart attack." As my other two brothers say, "Well, at some point his heart stopped...so, hey...a heart attack. Sort of." Mike was a good guy, but had alcohol issues and I think at some point just saw himself as having no future. So he got in his car and ran it out of gas in the garage with the door closed.
Anyway, we are isolated enough as caregivers, but then when the disasters are multiple, or perhaps involve perceptions of family dysfunction...boy, then you become even more isolated...people step back even more. I know that Jim on another thread is having some of the same issues after his triple loss. But Katherine, you are still in the position of having live relatives to care for, even though they are placed. I remember well that even when Larry was in a Rehab. I just stopped trying to plan activities or outings...as you said, there was always some Larry-related reason why I couldn't go. And I didn't have anything to talk about anyway--just dementia. What saved me were paperbacks--I love to read--and an escapist paperback can be picked up or put down at will--tucked into a tote bag or the pocket of your jacket--and pulled out if only for a couple of minutes while you are waiting for the pharmacy refill, or whatever. The other thing was music CDs in the car. I made sure my car was stocked with whatever music would lift my mood or carry me off to some other dimension...car time was music time...and it helped. All the issues related to caregiving for dementia relatives do suck your energy and leave you exhausted...one would hope we would have good friends and family who could help us through...but as most of us have experienced, that is not usually the case. I would say to try to do relaxing, non-stressful activities that can be picked up or put down at will, and performed in short increments if need be. Probably knitting or crocheting qualify, although I have not done those things for years. (Joan could probably speak to that.) And I think the Internet is a lifesaver, too, in terms of offering interesting websites and discussion forums...not just this site, but other sites that get your mind away from your problems and loneliness and speak to your interests. And I found that the mindless activity of just sitting and playing solitaire with a deck of cards (not online) was soothing. Part of the problem of being a nurse (as you, Ky Caregiver, and I all know) is that we are good at taking care of people, so we get a lot dumped onto us. Which we then handle beautifully...so that's great, but it can lead to the exhaustion and burnout that it sounds like you're enduring. So try the paperbacks, the deck of cards, the knitting needles, and the CDs. Others will probably come along with better suggestions. Hugs (((((())))))
You are in crisis, dear katherinecs, and if calling a hotline to get you the help you need is the first step in caring for yourself, then do that. They can walk you through what you need to do to get help.
Are there other family members who can step in and step up (perhaps they need a push). Can you ask that social worker for some help for you? If not, then ask her for an emergency referral.
IS there compassionate worker at your husband's facility in whom you can confide and who might make the call for you to get help? It is hard to ask for help when you feel so bad, but you must reach out for help.
My heart goes out to you. Do you know if you live in a community where others in this group live? Grab the group rope we are throwing to you.
Katherine, have been where you are. I asked a social worker friend of mine for the name a good stress counsellor, and the help the counselor gave was invaluable. I'll post my email for a few days on my profile, in case you live in Vancouver, B.C. and want her name and contact info. I couldn't recommend her more highly.
Thank you sincerely for those who have responded so far. Mary I would love the contact for the counsellor you mentioned. I am on Vancouver Island so maybe she would be open to Skype or phone talks. Elizabeth, thank you for your sharing and great suggestions. My heart goes out to you about your brother and family shame. So true about perceived "family dysfunction" and the results. Spot on. I am going to buy a pack of cards. Haven't played solitaire in years and used to enjoy it. Marche thank you too. Unfortunately, there is no other family. Both my parents were estranged from their families so I never knew my grand parents, aunts, uncles, or cousins. My dad killed himself in 1985 and my brother overdosed a few times finally dying at age 44. There were only the 3 kids and I am the only one left and the oldest to boot - turned 65 end of October. I was seeing a counsellor but got the impression she was tired of my story. Don't blame her really on one level. I realize I need to get counselling again. Sometimes I can't see the forest for the trees and need others to help me. Many thanks for your words and group rope.
Katherinecs Life just doesn't seem fair does it. I retired just before my 56 birthday only to have mil have major stroke then we ended up being caregivers for both in laws. Within a year of having father in law diagnosed with alz my dw was going through the same tests then she was diagnosed in 2012. Just seems like have been In caregiver role for 10 years. Doesn't stop also one son who has his own issues wonderful son but just does not seem to be able to find his way through life many hours just talking him through stuff. Just doesn't seem to stop We all have our issues and our baggage some tougher than others and most families have some form have dysfunction. I wonder where that leave it to beaver land is? None of us want to be here but The good thing we are all here together so many wonderful people to lean on so lean.
I am trying very hard to look to the future and not dwell on the past, don't know what the future will be but at least dreaming about it being better than the past years as a caregiver for a loved one with alzheimers keeps me going. Don't get me wrong we have had some wonderful times over the last few years but the emotional stress well you know.
Hey I beat you to 65 by two months and also live on Vancouver island. My wife still at home for now and I am going through the agony of deciding to place her. If you want to get together sometime or even talk on the phone maybe we can arrange something. Good luck and hang in there you will make it out the other side of this, we all have to.
Are all the calls emergencies or have they gotten comfy calling you for every little crisis? Seems some they should be able to take care of on their own knowing what you would want, or do via phone so you can continue on with what you planned.
I spend hours playing games on my computer -solitaire, spider solitaire, free cell, jewel quest and then games in pogo.com. I have lots of books downloaded to read, but just can't get started on one so back to the games. The TV is always going with him parked in front of it. How much he can follow anymore I don't know - he never tells me. We do a lot shows that we watched growing up or games on GSN.
Yes, try to find someone to talk with that cares. It doesn't matter whether they can help as much as listen and care. Often as we talk we get the answers we are looking for ourselves.
Your story seems to have triggered some very similar, sad and depressing stories from Elizabeth and Rona.
I can't say that I've gone through anything that bad, but during my care giving days there were a few times that I just wanted to give up the battle and run away. But those thoughts never entered my head when I was busy doing something that I really needed to do.
If I was doing anything at all that I thought was of some value to someone else, It gave me a feeling of self-worth and the depression was gone. So everything I did was not only for my Dear Helen, but for myself'. And I could actually be happy and proud of myself. It was only when I was sitting around doing nothing that I became depressed.
Since my Dear Helen is gone and I'm now living by myself in an old folks community I need to keep myself busy doing something of value to someone even if it's just attending little activities around here and being a friend to someone who needs a friend.
Anyway Katherine....That's the way it was for me........GeorgieBoy
katherinecs I have given up going to Alzheimer's support group meeting as my journey is so different from most of them. Each of our journey's seem to be so familiar but so different. I have seen so many at these meetings able to just move on and build a new life and others like me just have a terrible time. I sometimes think they are so good at handling all the ups and downs but then I realize they are no different then you and me. Unless you are living with this disease you really can't understand just how it is. Without this "living it" councillors, Doctors, physiatrist and all can only do so much. The rest is up to us. Kevan is not as aggressive but progressing slowly. I miss the us so much. He is so cute he tries really hard to make things "OK" for me but even he can't take away this pain and anger and lonesomeness. It's just there and maybe it will never leave me but I am trying but it is very hard, very painful. You have pulled me up and kicked my butt , gently since I have come on this site. You can do this girl!! You really can!!
This is so terrible a disease. Some of us have seen our loved ones free of this disease, both mind and body. Others only the mind at this point. Will we ever be free? Can we really build the new life or will we continue to suffer the effects even after our loved ones are free? Kevan told me a few days ago that he is just waiting to die. No life left. I think I am doing the same.
I guess as a survivor I can chime in on this, Jazzy. You're right, it is as if there is no life remaining...but actually, there is. It is like the way everything dies back in winter...there is nothing growing in the garden...everything is dead. But then, surprise, surprise...little green shoots start to come up. Hey, look at that! New growth! There is definitely goodness and life after Alzheimers.
I think katherine is dealing with more than Alzheimer's: She's got a delusional, paranoid husband who is hitting and cornering residents and staff, a sister who just killed herself at age 54, and a 90-year-old mother who has attempted (not just threatened - attempted) suicide twice in the last two weeks. She has tried to get her mind off all of this negativity by building some positive things into her schedule, but she is so drained by the constant calls and she is getting from lawyers, doctors, and a social worker that she can't even get out for an evening.
Katherine, I don't know what to say to you except that I think your choice of entertainment (a murder mystery) in the midst of all this chaos is a sign of your resilience. I wish I lived on Vancouver Island so I could pick you up and go to the murder mystery with you.
Dear Rona, Charlotte, georgestreit, Jazzy, Elizabeth, and Myrtle. Thank you from the bottom of my heart for your supportive comments, suggestions, questions, and caring (since my last posting here). Another big grateful to the others that responded earlier. I knew turning to you would help me. I got in contact with the counsellor Mary75 suggested and she will meet with me via Skype Thursday morning. Yay!! She will see me since Mary let me mention her name. Thanks Mary! I need some additional professional help. My current psychologist just chats with me and I think I need to dive deeper to come up with some strategies where I end up not so depleted. I am just existing in life and that doesn't feel good. Jazzy, your comment about just waiting to die resonated with me. I don't want to end my life but often think, "The easiest way out of this is to just die." And, I don't want to go there. I want to find more joy, and meaning, and fulfilment in life again. Myrtle, a young friend said the very same thing to me yesterday, "Katherine, you need someone to pick you up, take you to an event, and take you home." I do wish I had someone to take care of me. But like most of us, we solder on alone. We are all managing to the very best of our abilities and good on us! Big hugs to all of you. Tears running down my face in gratitude.
I didn't mean to suggest you might want to die. Just a comment my Kevan made and sometimes I understand why he feels that way. I feel Elizabeth worded it much better then I did. Like you I would love to have someone take care of me but that is not going to happen. I'm on my own. I'm supposed to go and play dart tonight but I just don't feel like it as I didn't sleep good last night, but I am going or I will be defeating the reason I moved here.
That is good to hear the counselor will skype with you. I truly hope it helps.
As many of you know, my older sister has VaD. We left there 3 years ago because I wanted to still travel but also to get away from her. She was being nasty to me, blaming me because she was not by her husband's side when he died in 1/2008. I had talked her into taking a break from his bedside to sit at the counter with me, 20 feet away. About 10 minutes later he took his last. I believe he waited until she was gone to go. He had VaD among other things but it was the aortic aneurysm that took him. I know because of all the blood in the urine but also how white he was. I have seen a few dead people but none as white or cold as he was within minutes. Anyway, I could not handle her and my husband both. Our younger brother is still living there, her kids have made no effort, despite saying they will, to get someone to come in during the day - she really should not be left alone while he is at work which takes him away for 14 hours. He doesn't sleep well at night cause she is often up and since her stroke in I think 2010 when my hb found her unconscious on the floor, he jumps every time he hears a thud.
So I ran. I have times when I talk to my brother when I feel guilty for leaving him to care for his older sister - something a brother 23 years younger should not be doing. But, he doesn't want her to be alone or go into a facility like our mom did. I must add that sister looks just like mom and that haunts and drives his desire to stay. It is that guilty and just tired of this whole non-life with hb that I have often thought of ending it. But, one must remember I have been battling suicide since childhood, so it is nothing new.
So would I. Who else would explain to us in plain English what the results of all those research studies say? And how else would we Easterners know about the heat and the wind and the night sky in the West? And your neighbors in the park seem like my neighbors, especially your friend with the fifth-wheel who left but came back and moved into a different park. And how am I going to find out if your husband's neurologist goes ballistic when she finds out you took him off the galantimine? And what about Jasmine?
I think we all have suicidal thoughts when we are depressed. They just comes naturally along with the depression.
The reason I would never follow through with it is that I would never want to be remembered by my family and friends as a weakling who took the chicken way out .......... Leaving them with a guilty feeling that they didn't do enough to help me through my depression.
When I was in counseling in the 90s I asked my counselor if God forgave those who took their own life. She said "I don't know but I would not want to stand before God and explain why I didn't trust Him enough to live'. That statement has kept me going the last 20 years.
As for the galantamine - he has his yearly with the PA at the VA. When I told him he was not concerned. He said he doesn't believe in medicating people if not really needed. Interesting. I am in the process of trying to get him qualified for Medicaid since I am on it. Then he will have Medicare and Medicaid so I can get him established with a non-VA doctor in case of emergencies and any other thing. Either way you look at - Medicare, Medicaid or VA - the government is paying for it!
And if a single thing were changed - all this might be different. What else would be different we don't know. You fought this your whole life and you don't seem like the give up type. I feel for you as you probably know. I'll tell a very short story that obviously fascinates me about how the quirks can become the stepping stones of our story.
Hitler was born in Austria. Nobody cares. He went to school with some Jewish boys which wasn't uncommon then. Hitler was bright and very competitive. Unfortunately in his public school class was Wittgenstein who went on to become an important twentieth century philosopher and Hitler always came in second to him. When he graduated he applied to the Vienna school of art. They turned him down. Twice. You can see some of his art by googling hitler art and he wasn't bad. Instead he enlisted in the first world war and won some acclaim. The Treaty of Versailles really was a powder keg and Hitler along with waves of people in Spain, Italy, Britain, and other countries went on the socialist/communist binge that was the rage in the 20's and 30's. He organized an ill conceived rebellion in Munich and was thrown in jail. There he honed his hate and wrote his book frequently citing "that jew" who simply has to be his public school nemesis Wittgenstein because no other Jewish person is noted in his life up to then. The rest we know.
I've spent time this year wondering what would have happened if I had taken some other step. I have no regrets about the choices I've made; but my memories are full of bad things I'm getting weary of because Alzheimers is supposed to be long over since February but it isn't. It only is for her. I've said all this. It leaves me thinking though about the particular chain of things that have ended up being the story of mylife and how there were lots of times where a single thing easily changed would have changed everything.
When I was thinking about this, Adele came into my mind with her song Someone Like You. I've been listening to it and the echoes of many things like that are in that song. The misty windmills of what might have been but isn't. I'm obviously not alone in relating to that. What would have happened if some single event that shaped our lives didn't happen? We'll never know.
https://www.youtube.com/watch?v=jCya1yiFFP4
Adele, Someone Like You, 2011, Live at the British Awards
Wanted to let you awesome people know this morning I had my first session with the counsellor Mary75 recommended and it was wonderful. She has come into my life at the perfect time and we are going to meet weekly by Skype for a bit.
Within the hour she clearly understood I am exhausted and suffering from care-giver burnout. She encouraged me to rest and not to work so hard on trying to be stronger. She described my life as being hijacked and a nightmare I can't wake up from. Boy, do I know many of you can relate to that, if not all here.
Elizabeth, you wrote on another thread, "It sounds mean, I know, but focusing on helping others is not the way I need to go right now. I've been helping others my whole life...now I'm the one who could use some help."
I am with you girl and please can we try to not think of it as being mean. I hear you. We are programmed as nurses. Now though it is our time, our lives depend on it.
Sending everyone lots of love and big hugs to everyone.
"It sounds mean, I know, but focusing on helping others is not the way I need to go right now. I've been helping others my whole life . . . now I'm the one who could use some help."
Why is it "mean" to not focus on helping others? Or is that just the rule for women? I have never heard a man described as "mean" because he goes about his business and does not focus on helping others. Maybe this is because women are so heavily represented in the "helping professions" that people think they should be helping others even in their spare time.
It's the rule for nurses. Unwritten, of course. One of my good neighborhood friends who was also an RN used to joke that "wife", "mother", "homemaker", and "nurse" were all pretty much the same thing. : D
Well, that explains it. I was never a mother, homemaker, or nurse and I was not a wife until I was in my forties. Although I was constantly pressed into service to help others - when you are single, you are always available without notice - I never had the time, inclination, or skills to focus on others. The first person in my adult life who really focused on helping me was my husband. He pampered me so much I could not believe it. (From what you have written, it may have been similar to the way Larry treated you.) I'm trying to repay his kindness now. But if I get out of the trenches alive, I doubt that I will be trying to find people to help. I'll count myself lucky if I can hang onto my own survival instinct. If that is mean, so be it.
Myrtle you are not being mean. I went from home where the younger kids was mostly my responsibility to marriage. Marriage was all about him, then the kids and him, and now him again. My dreams, wants and desires were mostly buried. Seems whenever I would attempt to, like go back to college, he would do something to sabotage my efforts. The closest I came was the few years we had workamping.
We all just need to keep each other going that one day we may be number one - number one when we are healthy and able to enjoy it.
Charlotte, it is never too late to study the things that interest you. You've shown your interest in learning by taking the on-line dementia course and you have a natural curiosity that comes out in your writing. Have you ever investigated the courses at the free tuition online Khan Academy? I have not studied any of their courses, but have read interesting articles about this new concept of learning and it might be worth investigating.