Encouragement for Late-Stage Caregivers

women-hugging

"How long can this go on?" Nobody can blame you if the question crosses your mind, when you're in the really tough haul of severe-stage dementia care, as physical declines match mental ones.

What can help?

  • Don't feel guilty about wondering. It's a natural response to a sad and stressful experience. It's also human nature -- and smart -- to look ahead and give some thought to the possible "what ifs" in your future.

  • Accept that all feelings are legitimate feelings. If you're having an emotion, then it's real and acceptable because it's what's happening to you. How you act on emotions is different, but simply having them -- any of them -- is A-OK.

  • Cut yourself some slack. Many days are unbelievably hard in severe-stage care. Bringing in extra hands or finding ways to get out of the house or nursing-care facility are critical steps -- and they represent a need that will increase, not decrease.

  • Look for the ways your loved one's essential personality persists -- a smile when listening to music, say. Embrace those wisps of the essential person while letting go of your old expectations for the former spouse or father or grandmother.


over 1 year ago, said...

I have just re-read gorilla guard's comment and here is where I am today. My husband is in rehab now for 3 weeks. I know that I am not going to be able to bring him home, as I cannot continue to do 24/7 care for him, with no help. Tried sitters, but none would please him. I have to now try to keep him in the facility until I can see what the next step is. Miss him terribly, but I know I will go down if I bring him home. Trying to get past these feelings, not of guilt, but of grief.


over 1 year ago, said...

thanks, gorilla guard. your comments really hit it on the head. my feelings exactly. I hope you are progressing with your life and still being involved in your wife's life, as best as you are able to be a part of it.


over 1 year ago, said...

somewhat. not all apply.


over 2 years ago, said...

I found myself in the sixth year of being almost a 24/7 care giver for my AD afflicted wife. On January 20, 2014, i found that i just could not do it any longer. For about the fifth time, my wife ran away from home and this time she made a "clean get-away". She ran into the forest behind our house wearing tan pants ad a green jacket, so it was like she was wearing camoflage. I had to call security and the sheriff's office got involved. A sheriff's deputy found her about two hours later wandering around in the woods. After three weeks in the hospital, I finally transferred her to a secure Alzheimer's Disease facility. Fast forward to now, after a tough start, my dear wife is doing well, the AD not withstanding. Suddenly, without really knowing what happened, I found myself with time on my hands, time to do things that got put on the back burner because of my wife's demented behavior. All you care givers out there know what I mean. I went through my wife's dresser and found single ear rings in the toes of socks, items that had been "stolen" and on and on. For the past year, it was all I could do to get through the day. After my wife entered the facility, I felt guilty, that somehow I failed as a care giver. With the encouragement of our four "kids" I sought counseling, which is ongoing. The counseling is very helpful. I am learning that it is OK to have a fulfilling life even though my wife, my lover, my friend is not with me any more full time. I visit every Sunday and a time or three during the week so I am still involved in her life....just not 24/7. I am not feeling guilty any more.


over 3 years ago, said...

It's sure nice to know that my feelings are legitimate, that it is okay to look forward and to consider what ifs!!


over 3 years ago, said...

All of it made me feel like I'm not so alone after all!!! :)


over 3 years ago, said...

Just having this wonderful news letter/ website is SUCH a help.. to read of other people dealing with what you are finding overwhelming is so encouraging and this article, as are so many others, is very practical. THANKYOU.


over 3 years ago, said...

It reaffirmed what I know I need to do. Support groups are really helpful in sorting out what is possible by passing along ideas that have worked. It's another setting to get one up and going, working on one's own mental health.


over 3 years ago, said...

My loved one has passed on, for a year now, however, he had aliz diagnosis for over two years, My heart was broken. I still miss him and have regrets that I did not stick it out. I am a person of age, and medical ambulatory issues and life in a high rise.building, it was constant care and fear for others safety. I will never regret keeping him but I worried for others safety.


almost 4 years ago, said...

positive feeling


about 4 years ago, said...

I'm so glad I'm not alone in feeling this way! I go back and forth in my mind - wishing for the day I can go back to my home state and cooler weather, wishing I still lived alone and could savor the silence, could eat when I felt like it, did one or two loads of laundry a week (instead of at least one a day) and had virtually no messes to clean up. Then I start to feel guilty, knowing that when that happens, my mom will have died. Makes me feel selfish, yet dreaming about unpacking all my things that are currently in storage, planning activities like going to the farmers market, having time to join a historical or horticultural society, being able to garden, sometimes helps to keep me sane. Other times it just makes me sad. When my mom gets upset that she can't help me do things, I waver between wanting to comfort her, and telling her that if she'd listened to the doctors and lost the weight they told her to, she wouldn't be in the situation she's in now. I know that would be cruel, but sometimes she just doesn't seem to get why she is like she is. It's 115 degrees now, we have one room only that's cool (not my bedroom!) and I have to go start the dryer, and make her some lunch. I have no energy to do anything. Mom tells me to sit down and relax (I absolutely CANNOT sit and listen to the histrionics of the TV show that specializes in DNA testing), then will ask why she has no clean nightgowns and pee-proof pads... And now I feel petty and whiny. I can't remember the last time (since I moved here) that I was actually happy.


over 4 years ago, said...

Well, since my husband had the pacemaker put in on December 22 it has been pretty much downhill. He was hospitalized with Sepsis on April 1 - given antibiotics and is now back home much farther down than before. He sleeps and gets up in a troubled state. He wanders the house at night, does not know the difference between night and day, it is now very difficult. So, this was helpful, cut myself some slack, yes, I will do that, don't feel guilty about looking toward my future, I have been doing that, accept that all feelings are legitimate, thank you, it is OK to have them. Look for his essential personality, he still smiles at a picture of an old airplane. How long will this go on? Don't know, but I did read that the pacemaker will not stop the dying process. The one with the defibulator will, but this on is not one of those, thank goodness. I intend to make it through another day.


over 4 years ago, said...

Giving the ok to ask "how long". I sometimes feel guilty knowing that I will be okay when I'm alone.


over 4 years ago, said...

last week congestive heart failure was added to my husband's illnesses of al' lewey bodies and parkinsons. now how is that for a plateful???


over 4 years ago, said...

knowing that others feel the same type of emotions that i feel. and that it is ok.


over 4 years ago, said...

It does go on and on and now my husband has a pacemaker. He is finally doing somewhat better physically with the pacemaker, but he is losing more ground mentally. I read some articles about pacemakers and dementia patients and wish I had had that knowledge before the pacemaker was put it. I took him to the ER and it all mushroomed from there.


over 4 years ago, said...

I just wrote a long question and then I had to get a new password and now it seems I have lost all that I had written. This is just part of the stress that I am going through. I am up to my eyeballs with forms, faxes, emails and phone calls. Your site just added to all that I have been going through and I don't have the time or energy to reach out again


over 4 years ago, said...

I finally admitted my wife of 64 years to the dementia section of an assisted living facility. She still remembers me. She wants to come home with me when I visit. Does visiting help her? How often should I visit? It hurts when I leave because she is so unhappy. Would it be better for her if I only visited once a week rather than 2-3 times a week?


over 4 years ago, said...

My heart aches with you all. Suzanne is now wheelchair bound, but the other day I was able to get her to stand and was able to give her a real hug....She let me know she enjoyed it and so did I.... Always look for what remains and not on what is lost..Easy to say and hard to do...... Joe


over 4 years ago, said...

As I lay in bed beside my hubby this morning watching him jerk and twist really bad I was just thinking....How long can this go on.....He woke up about 6 this morning and was up for about and hour and obviously thought we were havinga party because he kept saying that Faye (that's me) would be bringing more food and drinks around and if there was something you want and you do not get it just ask faye and she will get it for you. There is plenty of food and drinks..just ask Faye....He was up and down out of bed all this time. I had to keep telling him to come lay down. He would and then right back up again.....How long can this go on.....