Exhausted

@saraemma3709 I am so sorry that this is going on for you. Do you get any time to yourself during the day? Do you have a therapist or friends who you can talk to? Have you researched any of the agencies in your town that might offer help or know where you can find it?

Thank you, I do get time by myself...I have a lot of support from friends...I use a home health agency. My main problem is nocturnia which causes me to get up several times a night so I am unable to get restful sleep...have seen several md's concerning this.

So sorry. I’m feeling the same way.

Being the caregiver for my husband who is also nearly blind and having PV myself I am absolutely exhausted! No family near to help. I need a vacation!!!

Hello., I am so sorry this is causing anxiety for you. I think lots of caregivers feel this way as well. The longer we do it and the further your loved one gets further along in the process. We know eventually it will be over. It causes me anxiety, frustration and sometimes concern about the changes to my life once my spouse may finish his journey. All I can say is..Take one day at a time. Talk about it either with a professional or one of us. My spouse said to me today that he is getting worse and I know I won't be here much longer. This scared and surprised me all at once. He has never said anything like this before. I have seen his decline and fears about his condition. My brother has Parkinsons, he is sleeping most of the day, staring and saying little. He had early onset Parkinsons. I found out about his change from palletive care to hospice a couple of day's ago. He is 67 yo. I live in a different state than he does. He cannot hardly talk. I asked for prayer from his church and our friends. My husband was scared and concerned as well. He is in his 70's. I know this is long, but I want you to to know I totally understand. Hugs and Prayer's.

My frequent state of condition is EXHAUSTED so as you can see we all get it. My husband often wakes up several times a night to use the bathroom and then needs redirection to bed. If he has something the next day he is up at 3 or 4 wanting to take a shower or shave and gets belligerent when I say NO NOT NOW back to bed. A couple times he pushed me.
I also have to get up but go to the BR when he does. Then it’s 24/7 unless I get away. I do have a caregiver twice a week. Love those days. We both have therapists and I’m going on a girls trip for a few days.
My husband is 78 in June. I’m 73 tomorrow.
We are supposed to be moving in to a new independent living apt in Sept 2026 but he is getting worse and sadly I’m not sure he will be moving in there with me. He may need Memory Care before we ever get there. This is a CCRC so I will be 1/2 Mile away and part of the same complex.
This week he walked outside in the neighborhood without telling me and I couldn’t find him. I panic and get angry and sad.
A friend of mine’s husband is dying of pancreatic cancer now. She often feels we are in the same boat because in different ways we are losing our husbands. But her husband will be gone and mine will probably be gone in mind but not body for a long time.
I still love him and work to enjoy every moment we can but it is exhausting and also sad.
I’m going to start going to in person support groups and find some memory cafes for both of us.
We are going to celebrate my birthday at a nice restaurant tomorrow.
All I can say is I get on this connect everyday and have a couple pen pals from here.
It’s a blessing and bless you all.

Happy BDay, Mary! Hope you enjoy the outing today.
You're doing so many of the right things... hiring caregivers, going to therapists, respite time with friends, getting away from the house and your LO for periods of time, the plan to move in a couple of months, soon joining a support group, your connections here, etc.
All the above will certainly help get you through the challenges of caregiving. You're so wise to have taken these steps. They'll all assist in keeping you healthy and strong so you can better handle upcoming events and emotions that will inevitably arise as your hubby progresses with his disease.
All the best!

/LarryG

Larry Thank you for the encouragement and birthday message.
I went to your profile and now have printed your lovely poem.
I am sorry you lost your "girlfriend ;)" this year. You are so helpful to others.
Hugs,
Mary

Hi @maryvc, Happy Birthday! I hope things get easier for you, but you know, you are a wonderful person doing a great job.
If my husband has an appointment, he fixates on it, and incessantly asks me when it is.
If I tell him he has to shower at a certain time, and I wind up being a little late to help him, he gets angry with me. I either have to stick to the time I told him or not give him so much notice.
I find it easier to have him shower and shave the day before his apppointments. Then, no anxiety and added pressure to get it done. Maybe that would work for you and your husband.
Yesterday, he had to get blood drawn. Beforehand, he displayed some anger, pushed me and scoffed when I told him not to touch my arm because I need a shoulder replacement.
I backed down from tidying him up, and we went. The lab technician was so jolly with him, joking, etc. that it wound up being a great experience for him. He was shocked when I told him later that he pushed me, apologized. He told me how scared he was that he would bleed to death from the blood draw.
Like you, I wake up during the night when he goes to the bathroom. I use a weighted sleep mask now that helps me get back to sleep.
I attend an Alzheimer's Association Support group here. Some of the participants have installed a "Tile" tracker on their loved ones, combined with an app, Life 360, on their phones, to help locate them if they wander. I haven't done that yet, but I may have to.
I wish you the best.

Hello, Happy Birthday. Enjoy your special day.