Caregiver and After

howhale · September 24

My dear wife fell asleep the last time about 5 weeks ago after having endured years of this disease. She was diagnosed with MCI 8 years ago and her progression was moderate until about 2 years ago when it kicked into high gear and moved much more rapidly. Being her primary caregiver for all that time, with limited help during the day over the past 8 months or so, was a difficult role to play. Just like all of you, it demands more of us than we sometimes feel we can provide. We are tired, frustrated, angry, confused, etc. I never thought life could be worse. And then, the world stopped spinning and life became a challenge even greater. Life after the loss of my dear wife is demanding more of me than being her caregiver did. Being her caregiver was hard but I was caring for my love and the occasional smile or pleasant moment together. Now, I find each day a greater burden to bear than the worst day as caregiver. It hurts, physically hurts, emotionally hurts. It sucks all the pleasure out of life. It is a devastation the depth of which others find hard to grasp. Life after this disease I find is far more difficult than I would have ever imagined. I know it is early and they tell me it will get better over time. It must get better, it cannot get any worse. I guess my point in all this is to try to find all the enjoyment you can while being caregiver for your loved one. Relish every smile, funny thing together, meal enjoyed, every single thing that is positive. Look for those things, remember those times because the inevitable will happen, we know the outcome. And when it occurs and you are without your loved one, be prepared for the shock that follows. Having seen the before and after, I would take the worst before day over these after days.

annie51 · September 24

My heart goes out to you. You were so devoted to her and it’s inspiring. I once read that when a caregiver loses their person, their identity is lost as well. May you have the strength to endure until your world begins to get better and you find your new identity.

blacksparky · September 24

I would like to respond with a thought for everyone to ponder and give an opinion. My DW is in 3 rd year since diagnosis. She has progressed rapidly this past year. I have accepted now that I am now her caregiver and she is my patient. She has no idea who I am except that I think she knows that I care. Like suggested, I have started to get a plan B just in case I need one. My plan is still to keep her home as long as possible. I visited a couple of MC 6 bed facilities and really was impressed. I like the idea of them being small and more family like. My thought here is maybe it would be better for both my DW and me if someday she goes into one of these homes. Maybe that would help me when DW passes as far as having an empty house all at one time. I can still see her as much everyday as I want but can have much needed respite from the 24/7 job that I have now. At this point of our journey, I am just numb and confused. I hate the dam disease. 😩😡

annie51 · September 24

https://alzconnected.org/discussion/comment/254388#Comment_254388

@blacksparky

You must have read my mind. I was wondering the exact same thing! I’m thinking that one probably goes through the same feelings of loss and devastation but spread out over a longer period of time. Whether that is better or worse, we’ll never really know. I’ll be curious to see other’s opinions.

SDianeL · September 24

You are so right about trying to find enjoyment while caring for your loved one. Cherish every moment. The grief does get better but slowly. It’s taken me a year. I’m not there yet. My soulmate passed August 2024. I feel the mental and physical pain and know exactly how it hurts. At first it was all day every day. Now it comes in waves. So many things remind me of him. I stay busy and that helps. Everyday I try to do things to honor his memory. I do jigsaw puzzles and crossword puzzles. They keep me from thinking. I read about thought stopping and have been practicing that. In time you will have warm memories and not pain. Now sometimes when the memories come I can smile and not cry. Grief is the price we pay for love. I could have missed the pain but I would have had to miss the dance. Hugs. 💜

SDianeL · September 24

https://alzconnected.org/discussion/comment/254388#Comment_254388

I had to place my husband in Memory Care due to my cancer diagnosis. It broke my heart. When he passed in 2024 it didn’t help that he was in memory care. I felt such loss. What howhale describes is how I felt and still feel. As he says cherish the moments you still have.

Dio · September 24

So sorry for your loss and the grief you're going through. May you find comfort in knowing that she's free from the thorny grips of this disease. I do try to find joy in the present but am failing miserably because, frankly, this long journey and what is yet to come frightens me to no end.

howhale · September 24

https://alzconnected.org/discussion/comment/254388#Comment_254388

I understand your thought process of spreading the "empty house" issue over time and perhaps lessening the sudden shock effect. It may help if you are comfortable and confident with a MC facility near you. I know some who have had good results and so many who have learned the hard way of the failings at facilities. My father-in-law was in what we felt was a very good facility, a MC unit section of the assisted living facility in which he was living. Shortly after moving into the MC section, we noticed issues, small at first but collecting and growing our concern. We hired overnight sitters to be with him to supplement the staff. It was only through the reports from our own caregivers that we learned the huge failings of the care provided. My wife was devastated and we moved him again. It was then that she felt she began to fear failing victim to his same dementia diagnosis. That was when she sat me down and bluntly asked me to promise to never put her in a facility but to allow her to remain at home. I did and fulfilled that promise. I do not want to condemn all MC facilities nor suggest what I promised is the right course of action for others. I just want you to know that it may be what happens when you cannot be there that puts your loved one at risk so visiting at odd times, using extra help, even if for short periods, etc. may be the only way to know the truth. Here is another bit of caregiver trivia. To keep my wife at home I eventually needed hep to allow me short rest periods. I hired a home health agency reported to provide good caregivers and care. What a disaster! Besides sending questionable people, one shared with me their compensation. I was paying the agency $32 -35 an hour at that time. The caregiver was paid $17 per hour before taxes. Their net pay was close to $12 per hour. I understand it is a business and has to turn a profit but I could not live with myself after realizing I was trusting people who were being paid a net $12 per hour to take care of my wife. Caregiving in its many forms is a growing business industry with a lack of qualified employment candidates so just be very, very careful as you go forward.

howhale · September 24

The information below popped up this morning for me and I thought it might be of interest. Just a call to all of us to not ignore our feelings and symptoms, it may be more than just grief. It may be our body talking to us.

When A Broken Heart Isn’t Just A MetaphorThey say people can die of a broken heart, and for the longest time I thought that was just the stuff of country songs. Turns out, the medical world has a name for it: Broken Heart Syndrome (also known as Takotsubo Cardiomyopathy). And let me tell you, it feels every bit as dramatic as it sounds.When grief hit me like a freight train, I didn’t just feel it in my chest metaphorically; I actually felt my heart spasm. The doctors explained that extreme emotional stress can mimic a heart attack, the heart literally ‘stunning’ itself. In other words, my body was just as confused as my soul: “Wait, this sadness is so big it actually bends my ventricles out of shape?!” Yes! Apparently…grief doesn’t just stay in your head…it can flatten you physically, too.Broken Heart Syndrome can show up as chest pain, shortness of breath, pounding pulse, and dizziness. They rushed me through all the heart attack protocols and then told me my arteries were clear. Here’s the thing…my heart just couldn’t handle my heartache.And this is really important…if you ever feel chest pain or sudden changes like this, don’t brush it off as ‘just grief.’ Always get checked out by a physician, because it can look and feel exactly like a heart attack.Isn’t it wild that love, or more specifically the loss of love, can knock you off your feet so literally? For something as essential as the heart, it sure is fragile. I suppose it really is doing double duty, keeping us alive and carrying the weight of everyone we love. Here’s the good news…Broken Heart Syndrome usually heals. Unlike a true heart attack, the heart muscle tends to recover over time. Medicine can help, but what really does the work is gentleness, rest, and support. Essentially, the treatment is permission to be tender with yourself until the heart remembers how to beat without that crushing ache.In a way, it’s a reminder that grief isn’t “just in your head.” It’s a whole-body, heart-and-soul experience. Science says heartbreak is real…and your body is living proof. But the ache softens…and the heart mends. And though it may never beat quite the same way again…it still beats, carrying their memory inside. Gary Sturgis - Surviving Grief

Metta · September 24

howhale,

Your posts here, and others who keep posting in Stage 8, are so important to all of us. You are still a caregiver, now sharing your loving kindness with us as you did with your DW. Thank you and may you find greater strength with each day.

Last Dance · September 24

I don't wanna bust anybody's bubble but I don believe you truly ever get over the loss of your spouse especially when they've had Alzheimer's . I took care of my wife for 11 years at home. I did end up putting her in a memory care unit for the last six weeks of her life. I did it more for my daughter than for me because my daughter thought the stress was getting to much foe me. On a scale of to 1 to 10 I would give the memory care unit a 8 the downside to it was they just can't get and keep good help because they don't pay anything . The sad part was my wife was nonverbal so if anything was bad she could not tell me. I was there everyday from the time she got up in the morning till the time she went to bed at night except for 4 days when I didn't come in until 3 in the afternoon and two nights. One I left about 5 and one I left about 9. I still miss my wife dearly Some days not as much but some days the pain just doesn't want to go away and to be truly honest I think the only way you get over that is if is you find somebody else to take their place. However for me it hard to find another woman that can compare to her. I do have a few lady companions that once in a while we'll go for lunch but that's about it. I do work part time which takes away a lot from being alone and I volunteer. Some nights I have nightmares about how she was treated when I wasn't around, especially at night time. They had a male nurse who would be changing her once a night, I don't think anything ever happened, and I have no way to ever know if something did. But sometimes at night or even daytime out of no place it comes into my mind. Alzheimer's just doesn't take away their mind It steals your mind and memory of good times and replaces them with sad times the struggles of loving them and caring for them, The struggles of keeping them clean and safe and trying to maintain your own sanity all at the same time. this is something that still lives inside of me and to be truly honest I don't think it will ever go away until they put me in the ground.

howhale · September 24

https://alzconnected.org/discussion/comment/254428#Comment_254428

I too feel that I will never get over the grief of losing my dear wife. I have a hard time trying to force myself to recall good times, of which there were so many. I only see her image as she was in the last few months and then an older image pops up and it reinforces how much the condition impacted her, what we lost. It is those last images that play in my mind, even after looking at other happy images. Those recent sad images then trigger my guilt that I could have, should have done more to make her life better. Alzheimer will live on with me forever I believe and cloud my memories of all the good times together. It makes me even more sad to and I hope in time I am better able to just see her as she was in good times.

harshedbuzz · September 24

@howhale

I think caregiving changes us permanently as individuals.

My mom said that it was several years before the fonder memories of dad outweighed the PTSD-inducing ones of his final years.

HB

CindyBum · September 24

I am so terribly sorry for your loss and the pain you are feeling. And, thank you for the reminder to find and cherish the good moments with our declining LOs. I am struggling deeply with that these last months and your reality check is so helpful to me.

Dio · September 24

https://alzconnected.org/discussion/comment/254441#Comment_254441

I'm totally with you on this.

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