Do any of you suspect you are more emotionally fatigued than tired out? I am 79 and he is 83 - probably in stage 5.Right, I am old and deserve to be tired, but my curiosity is as active as ever. I think that's where he is. He's always asking me what I'm going to do etc..He is so slow doing most things, but he expects his meals be on the stroke of 12:00 and 6:00. I have always been pretty creative (organ, painting watercolors,reading, etc.) When I have any time for that I either sleep or read. It's too hard to get out the paints and have to put them back every time - not to speak of getting interrupted all the time. Bedtime is the time I can escape for a while to read - which is my outlet. But when I read late I pay for it the next day with tiredness.Luckily he sleeps late most days. I know many of you have it a LOT worse what with incontinance, etc. I suppose that will be coming, but no sign of it yet. When reading all that some of you are going through ,I feel guilty for being on my pitypot. It does feel good though to write it down. I'm taking out prepaid funeral plans tomorrow. He would like to go with me tomorrow, but I think it would only confuse him. Thanks for listening! Mamie
I think that in the AD world you are constantly at the limit of what you can endure, but then it only gets worse and worse.
When my 55 y/o wife got fired (for the 6th time) I thought it was the worst because our family income was cut in half. When she could no longer do any of her regular household chores I thought it was the worst because now I had to do them. ("What are you contributing to this mariage?") When she stopped bathing without supervision I thought it was the worst because now I had something else to do. When she started shadowing me and repeating things I thought it was the worst because it was so darn annoying. Now that her language is disappearing and I cant at all understand what whe wants, I think it is the worst because now I cant even help her (then the crying starts) Certainly it cant get any worse!
We have yet to start day care (probably with in the next month) . . . We have yet to start paying for care (good bye savings) . . . Incontinence is not yet a problem . . . . The phyiscal declines have yet to begin . . . . Etc, etc, etc . . . . . The problem with AD just as soon as you get adapted to the new normal it gets worse, it always gets worse.
How much more can I take? I donno I look to our 'stars' around here and they tell us that there IS a light at the end of it all. Then again they also say that all that I described above was easy and memorable and that the ending is absolutely the worst of all. We shall see.
Mamie, I'm only 56, but have been taking care of DH for over 6 years. Yeah I'm emotionally fatigued more than physically tired. I don't have time to do anything for myself anymore. Heart goes out to you girl! I can only support and sympathize. I have no words of wisdom, just empathy. I take it one minute at time. We're all here for you!
I think there are so many adjustments to this dementia. (H has FTD.) I can't imagine how they cannot cause physical as well as emotional fatigue.
I have my own plan. On the physical side, exercise, yoga, supplements. On the emotional side, prayer, meditation, affirmations.
But, as m-mann said, this can only go so far when income is cut in half; when there is no more conversation, when it can go nowhere other than worse.
Mamie, I celebrate how strong you are and your creativity.
Please, no guilt! We are each in our own private hell.
Sometimes when I just can't stand it anymore I just go to sleep. No meds, just go into the sunroom, in my part of the house and sleep for two or three hours. Not as a refreshment, just as an escape as H will not go to daycare, let alone ALF. My dreams are better than this life.
I have been a caregiver to my husband for the last sixteen years....I feel tired and exhausted, especially emotionally ...I too have my own plan....re exercise/supplements/meditation/music and so on. I am 69 and he is 86 years of age.... The long goodbye connected to this disease....does have impact on any well spouse.......I am new to this site, as of today, and am looking forward to connecting with others that have understanding of the spousal role of caregiving......thank you
Welcome to this site Cally. You'll find it the best place you could have landed. I've been caregiving almost 24 years--DH (Dear Husband) has a very complicated case, and until last week Monday he was Caregiven at home. He's Placed now. When I came here I found a new family, who understands the frustration, the grief, the thirst for information. You can rant, ask anything, share tips on handling the million and one things that can happen--and do. We are here for each other in a very special way because we "get it". Fill us in a little on you and your spouse. When was he Dxd(Diagnosed)? What type of Dementia is it? My DH has advanced Vascular Dementia, along with his long standing Schizo-Affective Disorder, and life long multiple Learning Disabilities. He's 69, I'm 63.
Wow! I've been caretaking for about 3 years and I can't imagine 15 years or 24 years - I think I'd just kill myself. And, I agree, the emotional toll is the worst. The last couple days I have had no patience with the constant questions (same one over and over again), his inability to hear me and I have to repeat the answer 2 or 3 times, and having absolutely zero help from him and haven't gotten away from him in many weeks - time for a big break. I've actually been thinking about the time when I will be alone - where will I live, will I sell this house and get a condo, when will this all come about, etc. I feel a bit guilty about even preparing for this in my head, but, I think it keeps me sane and looking forward to the light at the end of the tunnel. It's also a bit scary for me to think about life without him; we've been married for 30 years and I don't really want to be without him. Probably by the time it comes I'll be ready to be alone as the man I married has long ago left the building.
I am very near the end of the journey. I am not looking forward to what lays ahead. I do not think I can do this alone. I have been in the hospital and have heard the sound of death. I hate the sound of the heavy breathing. I also know that she will only get the level of care, I want her to have at home. She needs someone at her side 24hrs a day, just to wet her tongue and keep her lips moist as she breaths with her mouth fully open all the time now. I really do not feel good about things as I know, now that her breathing has improved the hospital will want to send her home. The doctor told me last night that she has weeks to live not days in his opinion and so he is going to release her.
There is a limit on the amount of words in a post (not sure how many, but whatever it is, I have no control over it). The way to fix that problem is to write everything you want to say in Word first. Then copy and paste it into this comment section. If it is lengthy, paste 1/2, click "add your comments", and then paste the 2nd half into the next comment section.
Please go to the top of the page and click on Welcome New Members to see my welcome to you and smborass.
Cally, also make sure in the upper right hand corner of the comment box it says 'big input' not small. If it says small just click on it to change it to big. The other safe thing for a long post is as Joan said - write in Word then copy and paste.
I wanted to ask if you were trying to post on an adroid? I had joined and then read for several months. Then, when I decided to post, well, I guess I thought I had to say everything at once. It did not go through, so I tried again, and it did not go through. Finally my third attempt went through and my guess that by that time I wrote it more quickly and it had shrunk with each subsequent try.
With its virtual keyboard it was very difficult to post on that device even though I did get a couple through so while I now usually read the forums during the day I save up posting (not on the android) until H is either spending time with the tv or has gone to bed.
In addition, other posters had advised me to: be sure I signed in first, and stayed signed in. I found that when starting a new topic I need to click that first- kind of on the upper left and be sure to click the bottom button as well.
As I have, you will find the kindest, most sensitive and most informative posters here.
welcome Cally. lots of good people here who can listen or just offer support or offer advice if needed. looking forward to seeing your posts we have several friends here from your area. divvi
Moorsb - I don't know what to say to comfort you, but I do know how you feel and I do feel for you. All this caregiving we do and all the grieving we have all done and continue to do never seems to end. I think we all wish it would all end, but we don't like what the end means in terms of being alone without the one we used to have. I think we have to try to feel joy that our lo has finally been freed from the horrible prison that this disease imposes. And, with time we will all learn to live again, ourselves. God bless you and your dw.
This is a difficult part of the journey, and you and your wife are in my prayers. I hope that you will make it as easy on yourself as possible in whatever way you can. If you have family who will step in to help, let them help ease the burden.
thanks Divvi and Abbey.....still trying to find my way around.....I am familar with a chat room....but this site seems a bit different.....My Hubby has Alz, diag 17 yrs ago.....and I definitely can use any and all support these days.....
hi cally, no i am in texas! but we have lots of folks from canada. 17yrs! wow thats a lifetime friend. good to see you here, you will find we are a good lot and lots of helpful info.
Moorsb said it best. We just adjust ourselves to one catastrophe in our lives and another comes along, time after time after time. All we can do is our best, and be as good to ourselves as we can. I have someone come in an do the cleaning. I go to water aerobics 3 times a week," I think that is keeping me sane" My DH and I go to church 3 times a week. I pray a lot! We go out to eat a lot! Whatever is beautiful. fun, amusing, interesting, Go for it.
The human body seems to be able to go a long time without food and water. She no longer responds to my voice, she is sleeping 24 /7 Vitas Hospice told me that she can stay here till the end. Now that she is getting morphine she is in no pain. Each phase you tell yourself if you can just make it thru this, things will get better. The past few days sitting in her room and watching her go, is now almost more than I can do. I am now getting some support from church members and that helps. Thanks for all your blessing as I take these last days sitting beside her.
moorsb, I am glad you are getting some support while on this the most difficult of journeys. You have been and continue to be a devoted, loving spouse and caregiver. I am sending prayers to you and Sandra hoping these final days will bring some peace during these days of unbearable sadness. <<<<HUGS>>>> to you both.
My prayers are that when the time has come for H it will be quick. If it cannot be quick I hope it will be without pain. My hope is that it will be both. I don't know how the other posters get the hug and heart graphics but I send them to you too.
I do not think, if this disease runs its full course that it is not possible given todays laws to have a painless or quick death. Pain or comfort management comes in the form of morphine and thou she is getting the very best care, you still have to keep watch to see that she gets it when needed. I have been hoping for a major stroke to end this, but she continues to hang on. I am not sure, but it looks like to me that she is in a coma. I thank you again for all the support. I do believe the cost of love is pain and one must suffer loss in order to have something of great value.
Dear moorsb, I have found that in all my years of helping, the "death watch" is one of the most difficult and fulfilling all at the same time. There is much i would say but not knowing this formun well will just say that my prayers are with you all.
Cally, I too have a large age difference with my husband. I am so bipolar with all of this...i can swing from "everything is fine and I can do this" to "how am i ever going to cope" in a two minute time span. I think that is normal....for us anyway.