Trying to stay positive

tryingtodurvive

I’ve been reading posts on this sight and have found them all very helpful. I’m really struggling day to day. I’m 61 and my DH is 72. I’m still working full time and am blessed because most of the time I can work from home. My faith and church have been so wonderful and a dear friend from church stay with my husband when I cannot work from home. Every day is getting more difficult. In the beginning I was bitter and angry that the dreams of a wonderful retirement with my precious husband had been taking away but now I am just dealing with the day to day heartbreak of my soul mate and best friend being gone. I’m not sure what stage he’s in. I have to do pretty much everything but thankfully at 61 I’m still very healthy other than the constant headache from stress. He’s just beginning to need assistance with eating bathing and pretty much everything but is still continent and physically able to get around although very slowly. I try so hard to be loving, reassuring and patient but I’m finding myself losing it at times and feeling so bad. I’m totally wore out and wonder how I’m going to make it so the way through this journey. It’s Christmas Eve and I feel like for the first time ever even Christmas isn’t bringing me any joy. I’m sure that’s enough for my first post just wanted to jump in after reading all the posts and finding them both heartbreaking and helpful.

M1

Welcome to the forum, all here want to help:we help each other.

You have a lot on your plate to work and take care of him simultaneously, i did the same for several years too during the pandemic. Have you considered a day program for him at all? I would check with your local Council on Aging about what might be available to help you. Your post overall sounds like you are at the point of needing more help, and there's no shame in that. Have you consulted an attorney about powers of attorney, and about financing memory care for him? Important to have a backup plan. Caregiver burnout is real, and we all suffer it and have to guard against it.

It's good you pozted. Hope you have a peaceful Christmas Eve.

charley0419

Welcome. This group best place you can be. I’m pretty new at this also but MI gave you great advise always does All I can say is everyone’s journey is different. But this group I find big help , I go on every morning by 6am and read DW sleeping as if sees me texting thinks it about her always, part of illness I guess. Still can do her things herself but not interested in cooking and was great cook. Short term bad , gets confused and depressed at times. Diagnosed moderate / mild stage , what ever that is, can be left alone.

Denise1847

https://alzconnected.org/discussion/67518/trying-to-stay-positive

Welcome to the Forum. I am sorry that you have had to join us. Please try not to be so hard on yourself. This is the most difficult experience most of us have ever had. We all lose our patience, get tired, get angry and depressed. You are not alone. You are among friends who understand so lean on us as we journey together.

God bless.

Sunshine2024

My HWD is in a day program 3 days per week. It’s the schedule he loves and the lunch. I’ll be honest! He takes a bus to/from and it helps because I am still working. Our local bus has an agreement w the facility and they radio in when arriving and someone meets the bus.

I have been a negative person my entire life. No longer though. Positive is the only way to get through this. We are coming up on one year. It’s been rough juggling everything. Best advice here was to get legal in order and take the keys. It was a bit of a struggle. The neuro we go to used to work with my husband so he listens to him. I’m thankful for that.

Let those who ask help you. Get rest when you can and look for the sunshine.

trottingalong

I’m 67 and DH 79. Most days I’m pretty patient. My DH is still mobile, dresses and bathes himself fine. He’s isolating himself more and relies solely on me. He’s very aware of his short term memory problems, he’s clingy. I’ve noticed he’s fixating on things more and more, which usually causes me more stress and work. We live in a remote area with very few to no resources. Like you and everyone else on this journey, I am losing my best friend and confidante more and more as each day passes. Every morning I get up first, make the coffee and read this forum. It just helps me feel less alone.

mrahope

Hello, there. I understand what you're saying about your dreams of retirement. It's only natural to have those dreams, and to feel the loss of the one who shared them. It's hard when you don't know what may be next.

Please forgive yourself for losing it. It is only natural, as we are all imperfect human beings. I often feel like I have a conversation going in my head which includes the things I WISH I could say to DH. Some of them aren't nice and I hate that they come out sometimes. However, sometimes letting them out to myself is enough. I sometimes take comfort in spirituality and in the natural world. Even sunrises and sunsets help remind me that the world has color, not only black and white.

I would also urge you to consider some counseling. It can be done virtually, and has helped me to just have a space to both vent and problem-solve without judgement.

ImMaggieMae

Welcome to the forum. This is one of the very best places to find real information from those who are ‘living in the trenches’. It’s very difficult caring for a loved one with dementia. Besides having all of our dreams of the future shattered, we are responsible for our loved one and good doctors who actually understand dementia are few and far between. It takes forever to get appointments with specialists, often 8 months or more and sometimes those appointments are painfully short. When something like a UTI comes up, which can seem devastating to a person with dementia, it seems to always happen on a Friday when doctors don’t seem to work anymore and you’re stuck with 3+ hour waits in ER or urgent care.

i think one of the most difficult things is that our loved one looks the same up until maybe the late stages, but they act very differently. It’s easy to think that they’re being uncooperative even when they aren’t really, they’re just very confused. And if we are their primary caregiver, we’re confused too. Everyone with the disease seems to act differently. There are a lot of coping mechanisms out there, but some work for some people and not for others. It’s trial and error and what works one day may not work the next. There are some good medications out there that help with symptoms (not a cure) but what works one month may not work the next. Or it may need to be increased. Or additional medications added. It’s maddening, even with good doctors. And medications don’t work for everyone.

I try to be positive, at least in view of my DH. His emotions definitely seem to mirror mine. I’m lucky that he is mostly cooperative, not aggressive or mean. But when he is agitated he’s in constant motion, standing up, sitting down, moving from one area to another and has to be followed because he is a falling risk. I can’t really teach him anything, nor can anyone else, because his memory span is often minutes. Inside I often feel terrified. He sleeps well with medications, but I usually am up part of the night just worrying about how to keep him content, worrying about how to pay for everything connected with the condition when we’ll need more in-home help. There’s also dealing with the isolation which seems to go along with this disease.

We do the best we can. I love my husband dearly, even the changed man who needs lots of help with everything these days, is mostly incontinent, needs help in the shower and with eating and dressing. He’s still him. I do sometimes lose patience and feel horrible when I do. The only saving grace is that he’s forgotten the things I said 5 minutes later. I wondered a couple years ago how I would make it through this journey. But we’re still here. In some ways it has become easier, some harder. I try to live for today even though It’s difficult. My main job is taking care of this man and doing everything I can to protect him and make him feel safe.

tryingtodurvive

I’m just now responding to all the thoughtful comments all of you made because I just figured out how to find where the comments were. As many have said it’s do wonderful that you know you’re not alone and so many are going through similar situations. I am one of the blessed ones as we have our financial affairs and legal affairs in fairly good order and have long term care insurance when needed. My husband is very loving even too much y off the time but I know some of that is from fear. We have been traveling with a friend that helps me with him so one of us has eyes on him at all times he still seems to enjoy it but we have a cruise scheduled in March and I think it’ll be our last. Coming home last time was difficult and it took a day or two for him to realize we were home. I’m trying to stay focused in every possible positive but they are getting less and less. Just want to say thanks to every one who responded and I pray for peace and inner joy for all of you.

tryingtodurvive

https://alzconnected.org/discussion/comment/192289#Comment_192289

your situation sounds very much like mine. If I could say one thing to you try your best to enjoy where you are and remember one day you’ll look back at where you are now and remember these were the good old days. I wish I was able to tell myself that earlier on. In trying to tell myself that now because I know things will get worse and I just hope I’m strong enough to stay focused and patient to do what I need to do.