In my feelings

Sgt D

I’m new to the forum. I’ve read a lot of the posts over the last several months. The cliff notes version of my story is, my wife and I were married young. This past summer we celebrated our 33 rd anniversary. She was diagnosed with young onset Alzheimer’s disease at age 49. I was 46. We are in year number 7 of this dreadful disease. She no longer knows we are married and she says she doesn’t have any kids (we have 2). The holidays and special occasions haven’t been the same in years. I don’t care about any of them. It’s like the joy has been sucked out of my life and I don’t know if I’ll ever get it back. I feel like I’m stuck in quicksand all of the time. It seems all I have been doing for the last 4 or 5 years is existing. I miss my companion. She knew me better than anyone on earth. It feels like as her story ends, mine does too. We are way too young to be dealing with this. There was so much we wanted to do in retirement and now none of it will happen. I’m usually very optimistic. Glass half full kind of person, but it’s extremely hard to see the light at the end of this tunnel. In a lot of ways I feel like my life is ending too. I’m now 53 yrs old and miss all the parts of a normal life. I’m probably the most selfless person there is but I feel selfish for the way I feel. This has been the hardest thing I’ve ever encountered by far. How do you all deal with those feelings? I don’t get much help because everyone knows I’ll take care of everything. Just because I carry it well doesn’t mean it’s not heavy. I know I’ll make it through it, it’s just hard, as you all know. I’ve just been in my feelings a lot lately. 

trottingalong

https://alzconnected.org/discussion/75008/in-my-feelings

Read about Quiet Cracking. You are there. I posted it a few days ago. I did not write it, but it explains quite well how caregivers feel and what happens. I’m 69, my husband is 81. I feel like I am at a complete standstill and sometimes I just don’t know what to do about it. Like you, I miss the person who knew me best, who I shared my warped humor with. That’s why I’m here. You and your wife are young, that makes it even more difficult. Keep posting and reading. We help each other.

SDianeL

Welcome. So sorry about your wife. This disease robs us of so much. The past, the present and the future. It’s heartbreaking. You are experiencing anticipatory grief which is very common in dementia caregivers. Everyone copes in different ways. I came to think of my husband as my patient and I his nurse. I had to admit that he was no longer my spouse and companion. Changing my thinking took some of the emotion out of my caregiving. That might not work for everyone. The other thing I did was learn all I could about dementia and caregiving so I could help him. If you have family and friends who offer to help, give them specific things they can do. Run errands, bring something for dinner, sit with her so you can get some respite time to recharge. Keep a list in your phone of things you need help with. Hire a housekeeper, lawn service, have groceries delivered, anything to take some things off your plate so you can focus on your wife. Read the book “The 36 Hour Day” which helped me after my husband’s diagnosis. Come here often for support. This community helped me more than anything. We understand exactly how you feel. You are not alone. 💜

Sgt D

https://alzconnected.org/discussion/comment/262585#Comment_262585

Thank you. I read it and I’ll have to say that’s pretty accurate.

Sgt D

https://alzconnected.org/discussion/comment/262587#Comment_262587

Thank you. I’ll check out the 36 hour day. I have found that going to the gym helps my overall mental state but unfortunately I’ve been nursing an injury (nothing serious) so I haven’t been able to go.

Call me Gram

I have been feeling the same way. I am in my late fifties and my DH is in his late sixties. Before his symptoms began, my much younger coworkers would comment on how I seemed younger than my age and they would complain that I walked quicker than they could. I was on my feet all day long. I easily got more than 10,000 steps per day, walked at least a half-hour every afternoon, and could get so much work done in a short period of time.

Now that I have retired to be home w/DH, I have found that I am skipping routine health tests/appointments, not getting my steps in, sitting more than normal, and eating comfort foods to drown out my feelings. I have several physical ailments that are wearing me down and I feel like I've aged a decade or more in 2 year's time.

So, I am prioritizing my own health this year. I can't keep this up the way it's going. It's not just bad for me… it's bad for my DH. If something were to happen to me, I don't know what he would do. Right now, he is competent with his own ADLs, but when the time comes that I have to help him dress, bathe, etc, I will need more strength.

I don't have time to be unhealthy… I need to get up and get moving. Like SDianeL mentioned, I am going to change my thinking about this. For me, I can relate more to parenting than to being a nurse, so I am going to shift my mindset as DH progresses. The DBAT staging tool includes ability equivalencies that mention age levels (adulthood, teenager, etc) so I am going to try to adjust my perspective based on my parenting skills.

I hope it helps me to rally, because I really need to kick things into gear and do what it takes to care for myself, so I can better care for my DH.

Sgt D

https://alzconnected.org/discussion/comment/262621#Comment_262621

Unfortunately I’m at the stage where my DW relies on me for everything. I’m trying to stay healthy because I know she needs me. It’s difficult, but not impossible to exercise when you are always exhausted. I have found that if I just make myself, I do feel better. I work an hour from home so I have a sitter while I’m working. Once I’m home it’s all on me, so I usually have to wait until DW goes to bed to catch up on things around the house and try to fit in a workout.

Call me Gram

https://alzconnected.org/discussion/comment/262631#Comment_262631

I can't imagine how you are coping. I'm not far enough in this journey to have any experience with outside help, but it seems that you could use more help than the sitter. I hope you can find some type of assistance with the day-to-day tasks, so you can make some time for yourself.

BPS

Our world gets smaller and smaller. I used to try and make holidays special but I have given up on that because it didn't matter to her and that depressed me. I don't have any words to help except that you are not alone and others made it through and then were able to have some sort of normal life so that is what I hang on to.

iowagirl1961

https://alzconnected.org/discussion/comment/262621#Comment_262621

I relate to everything in this thread but am especially having trouble with the comfort eating you mention. If you find some successful tips on that one- share please!

Sgt D

https://alzconnected.org/discussion/comment/262638#Comment_262638

I can relate to that. This year the Christmas tree was put up one night when she was asleep. The next morning I expected excitement but got no response.

Sgt D

I’m the opposite. Instead of comfort eating, I eat because I need to. I really don’t have much of an appetite most days.

RetiredTeacher

I can relate to our world getting smaller and smaller. Little interest in activities and with ambulation a problem, eating is one of the few things my husband is still interested in and can do. We go out to lunch every Friday and call it Fun Friday. He craves sweets and salty foods and often orders the hamburger, fries and soda. I've given up trying to recommend healthier options, I don't see the point. I try to watch what I eat but admit my coping mechanism with this horrid disease and watching my LO slip further and further away has been to eat comfort food and enjoy wine more often than I should. I can't save him but I need to prioritize my health and make better choices to save myself. Coping is difficult.