Just joined and new here

justbreathe2

Hi Carolyn,

It is a difficult journey for myself too. Same emotions that I go through everyday that you wrote in your journal. My DH was diagnosed with MCI over a year ago.

I have also started writing a journal.

I get fresh air everyday and that is not difficult with our dog. Try to only focus on one day at a time. If it is possible, do try to get out of the house for a few hours by yourself a few times a week. My DH wants to be by my side all day. It is difficult to get anything done and that frustrates me. Many things I have to let go. When I let him participate that makes him happy. Today, we will be out planting some grass seed.

Somedays I question myself and that is normal. The patience I have with my DH amazes me some days. Before this disease I was not.

This group has been so helpful to me. Hope as time goes on I will be able to help someone with their journey.

DTSbuddy

I am so sorry, Carolyn. You are not alone. My DH is entering his fourth year after diagnosis for progressive aphasia, a form of FTD. Almost no language, loss of direction, inability to make reasoned judgments, We wept together at the beginning, but now he is less aware of what he is missing.

He was a wonderful companion to me and our kids. I owe him the best possible care now. He has lost his 'executive functions' so he depends on my guidance for what to do. He has lost some inhibitions and social faculties, and ability to self-regulate his emotions. His emotions mirror whatever and whoever he sees. So when I show anger, frustration, or grief, he feels bad, without knowing why. I try my best not do that to him.

I know that he cannot control his actions: misplacing things, tracking dirt in the house, putting milk directly into the cereal box, trying to wear my clothes, putting my phone in his pocket, waking up 7 times at night and needing help to find the WC, leaning over my shoulder as I cook, leaving apple cores in the sock drawer, etc We can still watch the moonrise, and dance in the kitchen.

The grief is always there. It tightens my ressolve to be gracious and supportive. I don't deal with it; I ride the swells, and sometimes feel I am drowning. But our life raft is my appreciation and our love.

AlzWife2023

https://alzconnected.org/discussion/comment/201165#Comment_201165

My initial feelings, after denial, were anger and resentment. All I could think of were the things I lost or had to give up. I felt cheated. I hated my husband for what was happening now, for the future, and I found myself reviewing the past, too, through a dark lens. Then I started accepting the reality that either I take care of him and let love be my guide or I don’t. I began to understand this as a choice. I also allowed myself to ask for and accept help and I let go of status quo ideas. What was best for me and my husband and my family was for me to embrace caregiving. I worked hard to let go of anger and accept that life is full of challenges and surprises. I decided that no job could ever be as important as caring for the person I’ve loved for 35 years. I decided that my adult kids had a right —not a responsibility— to help and that I should not deny them that right—so I take financial help without guilt. That took a lot of courage and humility for me. It was part of letting go, giving up the illusion of control. I pray. I know I need help so I ask for it. I have found Grace. I aim to walk in the light. I know I am doing God’s work and knowing that is a reward in itself. Even if there is no God —as I used to think, life is bigger than us and there’s no use fighting against it. Feel all your feelings but choose to be happy. It took me over a year to get to this point. I thank God every morning for everything I have and I do not entertain thoughts about what I lack, what I’ve lost, or what I’m missing.

I hope this helps and that you can find a peaceful path soon 🙏❤️

AlzWife2023

https://alzconnected.org/discussion/comment/201058#Comment_201058

Exactly!

AlzWife2023

https://alzconnected.org/discussion/comment/201153#Comment_201153

Good advice. I stopped reading into the future recently and it has helped me tremendously. I think it was a way to try to control/predict the future but it just made me worry so much more and see my husband as worse off than he really is NOW. There’s still so much we can enjoy together.

northernlady

https://alzconnected.org/discussion/comment/201233#Comment_201233

I could have written this, right down to the dancing together. My DH still has language, but it is becoming less and less relevant to what is going on. Our world has become quite small. Our two teens bring welcome joy to our daily routines.

upstateAnn

Things will not get better in terms of the disease, but there is more than a good chance that you and your husband will find the grace to live with this. I did suffer a long period of depression, and denial. . What helped? I got my husband and me therapists. We started a strict gym routine (he has a trainer). We do put to lunch. We watch movies. We live. Music is a special gift. I think the key for me was to stop mourning what I lost and cherish what I still have.

AlzWife2023

https://alzconnected.org/discussion/comment/201165#Comment_201165

@spunkykid578 I wrote a long reply to you late last night but I don’t see it here. The essence of my process has been letting go of the illusion of control, feeling all my feelings but then choosing happiness rather than seeing things through a lens of despair and loss; seeing this role as a choice and changing my whole perspective on life or rather returning to the root of what matters most: love.

spunkykid578

https://alzconnected.org/discussion/comment/201438#Comment_201438

It does help. I am still struggling with what will happen when he needs more care. My children are still young and I still have to work. These are the worries I have. At first I was worried about the financial loss and now that is such a minimal thought.

AlzWife2023

https://alzconnected.org/discussion/comment/201958#Comment_201958

I understand and I am so sorry that you are struggling with this while raising children, Our youngest is 22 and he is not able to process his emotions about what is going on at all and that's another challenge that our family faces.

Try to take things step by step and day by day. Get some help from an elder lawyer and from family in terms of long term planning. The road may be long and you still have good years and good times ahead if you look for them. Sending love and a big hug.

tryingtodurvive

https://alzconnected.org/discussion/68367/just-joined-and-new-here

My DH is at stage 6 Alzheimer’s. I battled using medications for a long time. My issue was more anxiety than depression I worried about everything from the time I woke up until I laid in bed unable to sleep. I finally bit the bullet and started on Cymbalta. It made a world of difference in being able to cope. Me and my husband started going to a small church and learning to hand everything over to our wonderful gif has helped both of us do much. The new loving caring friends we’ve made has given us a much needed social life with people that accept him and love him just like he is. I’m in such a better place than I was a year ago. It may not be an answer for everyone but it sure was for us. I even have friends now that will stay with him while I work. He thinks it’s just friends coming to be with him. Good luck in finding your peace