Loneliness, Fear & Sadness

Deb T

New to this forum. My husband has ALZ and is no longer the kind, considerate, thoughtful, brilliant man he was. I'm feeling overwhelmed with grief, loneliness and functional depression. Although I get through each day and night, I do it without grace. I struggle each day to find my old personality — I was kind, and patient and optimistic. I'm struggling to like myself when impatience surfaces with my husband's new behaviors. I start each day with hope, but by midday, I'm nothing like I used to be. I hear the impatience in my voice. I feel the overwhelming sadness every evening. Instead of showing him how deeply I love him, I'm afraid I'm disappointing him with my new personality. If anyone else has gone through this, or is currently experiencing this, please share your ideas on how to get through each day with grace. Thank you.

Gibsonia

I’m experiencing all the same emotions you wrote about. In his more lucid moments my DH has told people he’s not suffering from Parkinson’s and dementia but his wife is. One thing that’s helped a little is trying to remind myself who he used to be. I have old photos and videos on my phone of him that remind me who he truly is despite his disease masking it now. Sometimes just taking a moment and looking at his face in an old photo gives me greater empathy for today. I can’t explain it but it helps me.

BPS

If a close friend or family members spouse was acting the way yours is you would probable understand their impatience at times and be amazed that they were able to deal with what was going on. Give yourself the same break. We all get discouraged and are sometimes embarrassed by our reactions, this is a very emotional journey we are on.

Deb T

https://alzconnected.org/discussion/comment/240313#Comment_240313

Thank you. That's a great idea and it's not something I have done. I'm going to pull out some pictures and place them where we both can see them. THANK YOU!

Deb T

Thank you. You are absolutely correct. Self-forgiveness is something I've told others, yet I fail to do that for myself. Thank you for helping me focus on something other than my sadness.

Anna2022

I totally understand. I have changed a lot during the last 4 years. If it helps I was told early on that I would have to learn new skills in order to get thru this. I am learning a depth of patience that I never knew I had (but it took time!), finding humor when I can, learning to love a slower life, leaning into the care-giving role that is not natural for me, and learning to move beyond acceptance into an appreciation and love for the people we both have become - knowing that DH's death is around the bend makes it all come into focus better.

jfkoc

We always need to be reminded that our lives have been turned upside down, that we have to learn a knew way to think and act and that along with those comes grieving for what we have lost.

Try, when possible, to let go of what was and accept what is. … a tall order of adjusting, but you will need to learn to get on the same page with your husband and that page is his.

We understand how hard this is and are here for you…

Dio

Welcome to the group that no one "wants" to be in. You're feeling what many of us have felt or are going through. I think acceptance helps, but attaining acceptance may be more challenging than you'd think. Come here to vent, seek advice or just be with folks who understand what you're going through. I don't have much advise because I haven't quite found that magic fix. It is my new normal. I'm just grateful that I wake up everyday and still breathing.

Timmyd

Before my DW ALZ, I had an expression about dealing with people: "Do not let someone else turn you into something you are not". The idea was to decide what kind of person you want to be rather than let someone else's behavior decide what kind of person you are going to be.

I have adjusted the expression to make it about the disease rather than DW, but the idea is the same. For me the mornings are the hardest. When I make it through lunch I give myself some some self-congratulation. The second half of the day is often the easier.

I have really learned to be present and in the moment. If you are able to find a moment of peace during the day, lean into it; immerse yourself. Do not dwell on the all the stuff that happened earlier or what is probably going to happen later. I have learned new ways of thinking.

RetaMeta55

Thank you for bringing this up. We all have to read your inner thoughts because it is all of our inner thoughts. Everyday I tell myself I am going to handle my DH’s anger, infidelity accusations, anxiety, criticism, and hoarding in a different way for my own peace of mind. I have to think about checking my emotions so that my DH keeps his emotion more in check. I have to think about others that live with me including the dog so we have a little more peace. We are all doing the best we can in our situations. It is a learning experience and each day we have to get a little stronger to get through this journey.

tonyac2

It’s hard to read some of these posts and responses. Many times I end up in tears because what’s being written is what’s in my mind and in my life. And seeing it in print just breaks me. I don’t have years of experience with this dreadful-disease, but I do have my own personal experience. I can see bits and pieces of it within other lives in what is written. It’s fascinating to see how much of it is interwoven and duplicated. I’m grateful for those who have much more experience and value the suggestions offered.

annie51

@Deb T I could have written your post word for word. I have not found the magic pill to prevent it but the posts from others are a big help. I’m so afraid that my impatient reactions over time have affected how he deals with me now.

Maru

https://alzconnected.org/discussion/72737/loneliness-fear-sadness

I could almost have written this myself. DH with ALZ, still kind but slowly losing his comprehension and beginning to lose rational thinking. Thank goodness this is still a come and go thing, but it is a preview of the future.

Yes, it is hard to remember all the time that his brain may or may not be working right, so I have decided that I really cannot believe what he say or to depend on him to make good decisions, or to remember to do his daily chores. I'm not living with a stranger yet, he just isn't quite who he was. I miss our conversations. I miss the man I married 66 years ago.

Depression? Yep. I finally gave in and asked for an anti-depressant, much as i hated to do so. I'm not sure it's helping. I have no energy, no desire to do anything. I just feel dead. I am hoping that that when the gloominess of winter is finally gone, the sun will help lift my spirits.Everyone says to do something you, the caretaker, enjoys, but I am not enjoying anything.

Actually, I've just given this all to God and stopped worrying about anything. I live one day at a time, doing the minimal of what has to be done. The funny( not ha ha) thing is that he isn't quite in stage 4. What on earth will it be like when he does? Well, one day at time.

I hope you find peace, solace. You are not alone and this is such a good place to share all of it.

Maru

barbara622

I truly am afraid of slipping into depression caring for my DH. He is just not the same man he used to be. He does not talk and when I say something he just answers with one word. I cannot wait for warmer weather so I can get outside and do something. I recently started doing jigsaw puzzles and they do take up a lot of my time and attention. It is a daily battle to remain positive but so far so good. This forum helps. And I too have given all my anxieties to God and asked him to provide a path to take. One day at a time.

barbara622

This was very helpful. Knowing I am not alone is so calming. One day at a time.

SDianeL

Welcome to the place for info and support. You are experiencing anticipatory grief. Grief for losing what was and sadness for losing what could have been. You’re not perfect so be gentle on yourself. Learn all you can about the disease so you can help him. The book “The 36 Hour Day” helped me. Also Tam Cummings videos for caregivers will give you tips on how to care for someone with Alzheimer’s. It helped me to stop seeing my husband as my partner and seeing him as my patient and me his nurse. It took some of my emotion out of it. It helped me be more patient with him. The best quote I read here was “you can’t reason with someone whose reasoner is broken” so I stopped trying. You’ll learn to fib to him for his sake. If you can get respite care for a few hours a week that will help. I don’t know what I would have done without this forum. You are not alone. We completely understand how you feel. Hugs. 💜

Biggles

https://alzconnected.org/discussion/comment/240351#Comment_240351

You sound so very sad I just had to send you some love and say that I care. I have had a very hard day today but I shouldn’t have had a hard day all sorts of positive things have happened but my spirit is so low, I tell myself how many good things have happened and then I find I am silently weeping. How do you carry this sadness and feeling of loss. As they say it’s the longest form of grief, like a living nightmare. The person I have loved and shared my whole life with 54 years who would bring me a cup of tea now can’t even boil a kettle. I send warm hugs and hope we can all get through this very sad time.

Deb T

https://alzconnected.org/discussion/comment/240366#Comment_240366

Thank you so much for your message. I'm feeling the love, compassion, genuine kinship with you and others in this group. I am grateful and overwhelmed — beyond words.

I read everyone's messages yesterday and took them to heart. I was able to separate myself from my grief and actually enjoy my husband in a way I hadn't been able to for some time. Recognizing that every day is not necessarily like the last, I was, nevertheless, more at peace with my life than I had been for the past year.

Much love to all of you as we continue our journeys — together and independently. What a wonderfully supportive group you all are! THANK YOU!

Maru

I am hoping that the anti-depressants kick in…that and the re-appearance of sunshine. There are plenty of spouses/caretakers who are on anti-depressants.

You are right, there is still so much to be grateful for,but missing the person you married while they are sitting right in front of you is tough. Sometimes the love I have for him still is just so overwhelming, perhaps even more so since I know that he has been sick for quite a few years before I knew it. He knew something was wrong, I just hadn't seen it. It is grief, of course. Praying for all us.

Maru

Russinator

((HUGS))

rev

https://alzconnected.org/discussion/72737/loneliness-fear-sadness

“Amen” to many responses! I really hate the person I become when I break under the weight of my DW’s symptoms. So common for her anger to escalate no matter how I respond, and no matter how many attempts at diversion fail. A common theme lately from her: “I don’t forget things! YOU forget things!!” That, and an almost constant sense of Deja vu: “We already saw this “. “We were here yesterday!” etc. It wears one down for sure. Guess it is at least partially true that “misery loves company!”

PattiRN2

Until you mentioned your struggle and loss of your old personality, I had not considered this loss. That is happening to me. I can’t find my old self, I think she is gone. I am becoming different person, who I don’t know. I force myself to do things I used to do, like going to an exercise class, because I think, if I do, maybe she will still be there.

wose

Ditto @PattiRN2 , I am completely estranged from myself…there’s nothing left of me. I hate myself now💕💜

Marla13

We must remember that we are all doing the best we can. ❤️

midge333

We all need to grant the grace to ourselves that we freely grant to others. Easier said than done, I know.

Please be kind to yourself.

Russinator

Praying for you