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Hello @bamby It is nice to e-meet you here at Mayo Connect, Clara! I am so sorry to read of your husband's healthcare challenges. It is so very hard to see our loved ones suffer and be in a situation that is beyond our ability to care for or help them with.

I know while I took care of my wife, I would frequently have physical reactions to her deteriorating condition. We love and then we really hurt when we see our loved one suffering. No wonder caregiving is so stressful! Interestingly, all four of the hospice nurses who cared for my wife when she chose to go into hospice care all are no longer working in that branch of healthcare. When my wife passed away they each told me they were just too drained to continue with others. I was shocked, but then it dawned on me --- if caregiving is that hard on trained professionals, it is no wonder it's so hard on us family caregivers!

I don't know if it would help, but what if you visited when one of the care staff were with him to help you have some support when you are visiting him? Just a thought. Wish I had more!

Peace, strength, and courage!

Thank you Scott. I too have bouts of anxiety and depression but try desperately to take one day At a time. I fear being unable to care for my husband and leave a double burden on our children. 3 have younger school and college age children, 1 has grandchildren and all are still working besides. They are very supportive even so. My main concern is that my husband cannot find his words and is unable to communicate his needs. I'm going to ask his neurologist if we should look into some patient trials that may be available if it's even worth the time. Just finished with the 2nd speech therapist who was unable to help. It is a progressive disease and he may eventually have trouble swallowing choking and not be able to make any sounds. I'm scared. He doesn't know this. He's not very active. Sits most of the day but is doing physical therapy lately. Sorry to ramble. Looking forward to chatting..

Your post brought tears to my eyes, @dianajane Yours is definitely a very tough journey.

I simply wish I had something soothing to offer other than saying I will hold you in my thoughts extra tonight.

Peace!

Good evening @dianajane You aren't rambling at all! Just doing what every caregiver I have ever met has done....search out some way to deal with the sense of loss we each grapple with daily, the isolation of caregiving, and looking for any hint, tip, or kind word we can find to help us have a day a tiny bit better!

My wife was never qualified for any of the patient trials during her illness, but she would have done it in a New York minute! She said, over and over, if her suffering could help someone else in some way, she'd do whatever she could.

One thing which occurred due to my wife's illness was it had a positive effect on our grandsons. Seeing the situation of their grandmother they developed an amazing deeper empathy for people in their lives. I never saw that coming for sure.

Feeling helpless when we are caregiving is a double whammy. It hurts us inside as we wish we could do more for our patient and outside when we so want to see our efforts help improve our patient in some way -- any way at all!

I hope Connect can give you the same support as it has me!

I try to help them find a purpose instead of just sitting in a chair watching t.v.
It took me a year and a half to get one client out to play bingo once a week. He enjoys it and is making some acquaintences. I donate the time to transport him the one block he cant walk and am trying to find a donated electric scooter. For him.

Thank you and yes, sometimes just to listen but without it breaking the heart. I try to change topics, smile, do something crazy like start dancing around, i try to get the damn tv turned off and put on some music just anything to break their current mindframe

Clara, I understand the stress issue. My husband was placed in a Memory Unit a year ago. He had become more aggressive to me and was having hallucinations and delusions about men visiting me. After three months in a Senior Behavoral Dementia Unit, we finally found placement in a care center about 45 minutes from our home. I visit every other day. My family says I look much more rested even though I have to drive about an hour to visit him. I am able to get out to church and the other activities that I had put aside during the two years that he was still home, but couldn't be left alone.

About 2 months ago at the Care Giving Conference I mentioned how stressful the area was for him and me when I visited. Very noisy, loud voices, and one male patient who made inappropriate comments to the ladies and just kept up a loud conversation all the time he was in the recreational/dining area. Several of the ladies were wanderers and were constantly roaming the area picking at things, and touching furniture, people, etc. This really upset my husband when they would get close to his chair and then he would become agitated. My husband was unable to to anything for himself except feed himself, so escaping or wandering wasn't a problem with him. a few days later when I was visiting the head nurse said they had had a meeting after Ieft and though he would do better in the "general population" area. There was a room available and suggested I visit it. So she took me there. He would still have a roommate, but his bed was by the window with room for his recliner and he could have his own TV, etc. I agreed that this would probably be better and they moved him the next day. He has been so much more comfortable and the staff rotates between his area and the Memory Unit so he knew them and had very little transition. He is able to attend the recreational programing that he is interested in, which is mostly the music programs, but at least gets along with the other residents and has some response to a couple of them. I'm glad he made the move. We still have days when I don't know how to respond to him, such as yesterday when I arrived he said as soon as they took him to the bathroom he would be ready to go home. He had a car and even had the keys. Those are the hardest times, when I really don't know how to respond and he isn't easily distracted. I never tell him I"m going home, just that I have to take care of Suzie, our small rat terrier that we've had for ten years. He accepts that and I'm able to leave with out agitating him.

This is a difficult but just one day at a time. I do attend church regularly where there is a group of ladies who have gone through this with their husbands and we have a "support session" every Sunday to help support each other. I also have two support groups that meet monthly that I try to attend if it doesn't interfere with my visiting schedule. Every little bit helps and that gives me a way to help others also. Just keep praying and don't be afraid to share with others. It is a difficult road.

Thanks for your thoughtful words.

Mona you are a gem. Husb loves music and we don't have tv on until the news which he has for 3.5hrs....not sure he really absorbs it but will try to comment when sports are on or laugh when appropriate. Looking forward to chatting. D

After reading your note I realize there are other caregivers under much more stress. Thank you.