Alone(4)
So what is the path forward? The plague of Covid is very real. It requires isolation and it provides a kind of "purgatory" while I try to plan a future. I feel I have grown old with thsi disease. My health is good, I've not been a patient in a hospital since I was 19. My mind is Ok I routinely beat my computer at chess. I have no religion. I am not depressed in any clinical sense but Alzheimer's and Covid have beaten me down.
Thanks for listening and being there.
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Oh crushed,
you are not alone in the way you are thinking at least. Many of your thoughts and feelings are felt by us here. It sure is a lonely walk and Covid has made it worse for sure. I get out more than you but the isolation is real on a lot of different levels. Let’s hope that we can get a good vaccine rollout going and you can get back to seeing your wife in person. And hold your new Grandchild! That’s something to look forward to.
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If you've been doing this job that long, and you haven't been hospitalized since you were 19, you've done well. Keep your nose to the grindstone. The vaccine is here.0
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Dear Crushed,
I am sending you warm and loving cyber hugs.
This pandemic has worn me down as well but I will do what I can to make it through. Likewise with the Alzheimer's journey. I will do what I can to make it through.
Actually, when I am feeling overwhelmed I recall your wise advice to do what ever it takes to survive, something about pole dancing, playing cards and having sex. That's the jist but definitely not your exact words. What I do to survive is take some time to enjoy the birds in my backyard or soak in a hot tub or pet my dog or just breath deeply. I am mindful of the moment. I am grateful for you and your wise advice.
Thank you for sharing your heartfelt thoughts. I hope they pass and you can savor any good that comes your way, no matter how small.
We are all here for you.
-LT
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Crushed-
First, Happy Birthday! I know 70 is a milestone that causes you to sit back and evaluate your life and try to figure everything out. The introspection can be good for you when you think of your family successes, career success that alleviates financial worry, and how well you have taken care of your DW. You’ve done quite well for yourself in many ways.
I am beginning to think that 70 isn’t that old. I am a few years behind you in age, and in the status of my DW, but most of my friends are already over 70 and doing quite well. Some are with partners of many years, and some are finding new relationships. Of course Covid puts a wet blanket on socialization, but it won’t be forever. With vaccine availability, a national response to the distribution and deployment, we are on the road to recovery.
That said, I share many of your feelings: will I ever have my life back? Will I ever share my life with another woman? Will I be physically able to do all the things I’ve been wanting to do but couldn’t do because of caregiving? When this is all over, what will I do?
You don’t need my advice; I usually need yours. But encouragement I can usually give. This morning I am rested, calm, and optimistic. We will all make it through this, and it is up to each of us to make our lives what we want it to be. Be well, be happy, and be proud of the way you are taking care of your DW.
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I will be 80 in March so as your elder I am going to tell you to get out of the house!
I too am inside most of the time but I find that getting in the car even if for a short drive to see what is going on the neighborhood is always a good thing. If the weather is nice I take my rollator fot a spin.
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(((((Dear Crushed))))) First, happy 70th birthday, sir!
As to the feelings - I have come to think of such downturned feelings these days as similar to a light rheostat. Some days or weeks, things are lighter - then other times, the rheostat slides and dimming of the light comes unbidden. No control over it; it just is. My aged aunt used to call these fluctuations her dark, dark Swedish days that would come upon her at times after she lost her husband.
This has been such a long difficult time for you; so many carer years and all of the plans and dreams for you and your wife's retirement and aging together have been snatched away. Even our self-identities can become skewed in such times. Her inability to recognize you is truly sad and I am so sorry. Though we have computer, texting and phone contacts with family and friends, it is not the same. We human beings are not built for that on such an extended plane of time. Can't travel, can't mingle, can't even breathe without concern. Life is now so complicated and compacted in a tiny space that there are times I too wonder who I am anymore. Not clinically depressed, just feeling the effects of so much for so long. I do not recognize my usual self and wonder where she has gone, but I have faith that I will eventually find her again.
Years of caregiving; then months of isolation with horrible, awful year of COVID and more to come; months of beyond dread politics and news reports - it can feel somewhat overwhelming. (I have learned to snub most of the news programs except for a.m. local news and weather. I don't go looking for bad or sad.)
I so wish I could make this better for you and for all of us. I too wonder where I am going as I too am becoming more ahem, "mature." Such a strange place to be in these challenging times, and alien feelings emanating from one's own usual self. If anyone finds a magic wand; please wave it like mad forthwith.
What I do each day is to remind myself how blessed we are in our home. There is a roof over our heads, food in the cupboard, heat for the cold weather, health insurance, sufficient income to sustain us. Family, albeit at a distance. So many are not able to be in such a situtation and their day to day challenges are dire. So yes; I am remenbering to be thankful and that helps.
You are a very smart fellow Crushed, you have been very strong; you are human in the throes of losses and things absolutely uncontrollable when you are used to being able to do so much and be in the control of the aspects of whatever popped up. Who nurtures the nurturer is another question. Yet: Crushed; I feel you are like cream; you will always, always rise to the top. You will once again find the light and the dynamic person you always have been - he is still in there.
jfkoc has something there; going for drives non-contact mode. I shall have to start doing that as soon as our rain storms pass. I am trying to read good fiction novels that are not negative and to watch TV programs/films when I do watch that are not violent or highly negative; I spurn watching long news programs. Yet . . . there is still that kind of real and existential lonely and uncertain aura around things. Understandable for most of us these days. We shall have to get rollaters and race jfkoc and her rollater down the block - the geriatric snail races; laughter really IS the best medicine when we can find it.
Do come and talk, Crushed. We get it, we feel it, and we care. Take good care of you for family and for all of your friends here too.
Another (((( )))),
J.
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I have been in to the stage of frustration and "why me. " My husband is 72 with alzheimers complicated by psychosis (controlled now). I worked with people with demtia of all sorts in a 40 + year carter in home PT so I am very aware of the usual course of things. My husband had a brilliant career and is very intellectual so scores very high on many of the tests he is given and covers very well. Speech is fluent and mobility is fine so to most people he gives the appearance of simple having memory loss.
Seeing the behavioral issues he presents with just seems put of context. Hygiene is a problem. I have been able to get gum to take a shower occasionally but he went a couple weeks without.Hair has not be washed in a couple months nor have teeth been brushed. He either says he did when he clearly did not or makes up a reason why he does t need to. Mild urinary incontinence has appeared and he puts wet briefs back in draw to wear again the next day. I intercept them and he has said nothing.
Many times I feel like his issues are control issues and he is intentionally making things difficult and have tell myself it cames with the nature of the disease. If try to help him he gets angry. He denies doing things and has pat answers I didn't do it (often angrily) or I forget.
How do you handle the frustration of needing to do everything yourself on top of cleaning up the messes from when spouses insist on doing things that create more work. I try to be understanding ,not argue, not show my emotion and do things I know he likes. He seems content as long as he can control the temperature, noise level and knows where I am and what I am doing. At times he is quite pleasant at other times difficult
Thank you for a place to vent my frustrations. We had a few good days followed by the past couple that were tough. Things will be better when we have some control over Covid. Getting out for my hobbies lets me put so much of this in perspective. This group he's remind me that I am not alone in the struggle!
One thing I need help with is giving a prn med in the afternoon when my husband is agitated. It would be an occasional thing. He would not be agreeable to take it an he gets no other mud day meds. How do you get spouses to take meds when they are alert and don't want them?
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I get out everyday. I meet with friends for coffee at a place we can seat outdoors.. Wear a mask, wash my hands, and have a bottle of sanatiser in the car which I use every time I get back into the car. As I get older I realize that I am on the downside of my life and do not want to spend it locked up in my house.0
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Crushed, Wishing you the best for your 70th Birthday! The combined whammy of Covid & Dementia are taking its toll on so many of us.0
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A very reflective post, Crushed—thanks for sharing what’s on your mind. Those round number birthdays give rise to thinking about the big picture.
You’ve done a magnificent job caring for your DW. And you’ve clearly lived a full and very satisfying life, pre-AD, with career and financial success, a loving and deeply rewarding marriage, and a wonderful family. Many blessings and much to be glad for. Congratulations.
And yet, the reality is that the immediate present is unfulfilling, with Covid restrictions, not being able to see your DW in person, and wondering about the highly uncertain future. Having had to place your DW in memory care, along with Covid stay-at-home reality, gives you that much more time for reflection, assessing where you are, and thinking about what life will look like.
It will be a challenge for you, and for many of us, to re-make your life, post-caregiving. You are blessed with health, financial security, and wide-ranging interests. In time, the path forward will become clearer to you.
I’m not as far down the road as you are, with my DW in late stage 6 and able to be cared for at home. But at age 63, I do occasionally give consideration to what life might look like after care-giving. I ask myself the question, and come up somewhat empty-handed: partly not to get too far ahead of myself, and partly because I simply haven’t figured out the answer. Yet.
Thanks again for sharing your thoughts. You’re a valued member of this community.
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Thinking of you Crushed. Hope you have/had a good birthday!
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Deer Crushed, Happy 70th birthday! I know things are hard right now. Just wanted you to know you’re in my thoughts and prayers. Sending hugs. I appreciate your post so much.0
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Dear Crushed,
Happy Birthday. I understand how much alone you feel. Please remember you have a lot of friends here that care about you. You are there for your DW even if you can't be by her side you are overlooking the wonderful care she is getting. You have been there for us we are here for you. Hugs Zetta
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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