Tired and Sad Need to Talk

Biggles

Things seem to be getting worse although it’s hard to tell. Sometimes my DH is relatively responsive but everything seems to be getting harder and slower. He is having an ECG next week an irregular heart beat, he has swollen ankles and sleeps a lot during the day and most of the night until 4.30am anyway. Has trouble walking which, we always loved and it’s getting harder to get in and out of the car. His APHASIA seems to be worse, eating is more difficult I hand feed most of the time, we shower together and I help him shave and dress. He’s so compliant and sweet with it all but he said this morning I think I’ll die this year. Does he know what he is saying or just wants my reaction. We’ve just had our 54th wedding anniversary, danced (shuffled) in the kitchen and had prawns in our fingers and a tiny drop of champagne. It was lovely but I cried thinking this might be the last. Why oh why, it’s so sad to have been so happy, the heartache is awful for all of us in this situation.

Mint

Biggles I am so sorry. Virtual hug for you and DH.

AlzWife2023

I am sorry @Biggles

Your DH sounds like mine. Don’t be afraid. Just keep enjoying him. You are doing a GREAT job.

Sending love

mrsdee13

I am glad to hear you've had a great anniversary. That's a blessing. Enjoy the time you have with each other. Sending cheer😉

Biggles

https://alzconnected.org/discussion/comment/233840#Comment_233840

Thankyou the hugs are wonderful.

https://alzconnected.org/discussion/comment/233843#Comment_233843

Thankyou for your care. It gets so lonely and sad sometimes.

Phoenix1966

So hard to do, but live in the moment with him and don’t dwell on tomorrow.

fmb

Oh Biggles! ((Hugs)) First of all, congratulations on your anniversary! It sounds like you had a nice, intimate celebration. I agree with Phoenix1966, live in the moment and don't let thoughts of the future spoil the joy of the moments you can share now. I know that is very hard to do. Treasure the memories of the special things and the ordinary days, too.

Your DH may very well have an intuition at some level that he is dying. Although he has not articulated it, I believe my DH knows and is patiently waiting for that day.

Please take the following with the spirit of kindness in which it is given: Given his current condition, what do the doctors hope to accomplish by having the ECG? Would they plan to treat the cause of the irregular heartbeat (pacemaker, surgery for a bad valve, or ??) Would it be appropriate to subject him to such treatment? The symptoms you describe seem to indicate that his dementia is fairly advanced. Any surgery is likely to accelerate the progression.

My DH has Atrial Fibrillation (irregular heartbeat) and congestive heart failure. His symptoms include edema and weakness. These conditions were diagnosed after he had a stroke in June 2023 when he was already in Stage 6 ALZ. Other than prescribing a blood thinner (which has since been discontinued when he entered hospice care), the cardiologist did not think aggressive treatment was appropriate at his age (then 91). A diuretic has been prescribed to relieve the discomfort of the edema, and his kidneys are failing. Knowing that Alzheimer's is a terminal disease, I made the difficult decision to not prolong his life by seeking any additional treatment for his heart problems. He is now is Stage 7, and I sincerely pray that his heart gives out quietly in the not-to-distant future, sparing him continued progression.

housefinch

I agree. I’m saying this in compassion and kindness: What is the plan for the results? Blood tests? A Holter monitor for several weeks? Medicines to prevent arrhythmias, which can have their own side effects? I know it’s easy for me to make these suggestions because I’m not emotionally involved. I’m just wondering if maximizing the happiness of your time together would be a gift to you both, instead of treating him as a patient with a long problem list to address? I understand wanting him to be comfortable. Sending you hugs. You are doing an incredible job.

SDianeL

so sorry. I have been where you are. Sending love and hugs. My prayers are with you both. Cherish the memory of your anniversary. 💜

Carl46

So sorry, Biggles. No part of this is easy, is it?

JeriLynn66

Another big hug from Lorita's Porch. I'm so sorry for the sadness. Here for you and holding you close in prayers.

Bailey's Mom

Nothing to say except I feel for you. At least he is sweet and compliant, it makes it much easier, but probably more sad as well. Another (hug) coming your way…

trottingalong

I, too, will throw in the hug for you. Nothing about this heartbreaking disease is easy.

Debra

I know how you feel, I have a similar situation and I am having my husband take a CT scan and blood work. I think you have to listen to the doctor and if he or she needs a test I believe in doing it. A person with alzheimers can also have other issues that need attention, and if treated may help the alzheimers. I have a wonderful doctor who treats my husband as other patients, he is suspecting the possibility he may also have other issues that are interfering with the alzheimers. None of us really knows for sure what is happening 100%. Having a senior medicine doctor is so important if there is one in your area.With Kindness, and hope

debbie

jehjeh

Sending hugs to add to all the others.

Russinator

((Hugs))

RetiredTeacher

https://alzconnected.org/discussion/71770/tired-and-sad-need-to-talk

I hear you and my heart breaks for you. It is hard especially when we vividly remember the person they used to be. My DH has had several strokes and Vascular Dementia. He is getting worse cognitively and figuratively. Walking is difficult, even standing for more than a few moments is painful. We had our New Year's Dance at 7 pm this year. He shuffled his feet for the first minute and I held him up,holding him close, standing in place until the song ended. That night I balled my eyes out knowing that would be our last upright New Year's dance we've done every year for 38 years. It does hurt. Loss is real. I don't know if he'll be here next New Year's or not. I miss him, the big, strong guy I fell in love with. Now when I look at hi. My eyes well up with tears. My heart breaks for you and you are not alone.

Biggles

Thankyou so much, it’s heartbreaking and painful but knowing you are not alone somehow helps. The tears we cry are shared with each other for our pain, our loss and our knowledge.

Biggles

Not at all easy just sad.

Biggles

Thank you the hugs are so necessary and so is a shoulder to cry on, Thankyou.

Biggles

Oh fmb I hear you loud and clear and I too am a realist and my greatest wish is for my DH to go into a peaceful sleep and not wake up but the thought of finally loosing him is unbearable. I have always been a fighter and I can’t give up but I know it’s hopeless and it’s a one way downhill road. It’s so horrible. Thankyou for being so kind and honest, my heart goes out to you.

Jazzma

You put what I feel into words. "It's so sad to have been so happy." We're 10 years in and I still cry most days. Know that everyone here is there, or has been there, and we all send you tight hugs and warm thoughts.

LindaLouise

https://alzconnected.org/discussion/comment/233908#Comment_233908

You expressed this heartbreak so well - "we vividly remember the person they used to be". Sometimes as I help my DH eat his lunch at his MC, I look in his eyes and see that young man I fell in love with in 1977. There are days when he says something in gibberish and I think for a second that he is just joking, even though I know that isn't the case. I find notes he wrote to me, directions for work colleagues and a wooden ferry boat kit he made for our kids and their cousins one summer. How can this amazing, beloved, accomplished man and loving dad/grandad have disappeared? I know it's the disease, but its so hard to reconcile the old with the new, and so painful to go through this process of slow but certain loss. Some days its hard to breathe and hard to figure out how I go on without the one I thought I'd grow old with. Seeing older couples holding hands, walking or out for dinner brings on waves of grief since I don't and won't have my person in the same way, any more. I know you all understand - sorry to ramble on a bit here, but I'm feeling very sad looking out to a future without my DH.

hiya

it’s a very emotional journey both they and we are on. Know you are not alone. You have friends here that understand to help you through this Sending a big hug

BPS

some days I think I accept what is and am ready to move forward then the next day I am in the past dealing with what was or could have been.