Learning about myself

JC5

Almost 3 years since DH dementia diagnosis. I’m not only learning a lot about this awful disease but also about myself! Some I’m proud of some not so much. My recent “aha moment” really opened my eyes. I’ve been very short tempered and not understanding with my husband’s shadowing me. Why? I know the obvious answer, but why am i so annoyed? Once upon a time very early in our marriage, I loved spending every minute I could with DH. But alas, he was too busy for that. Between work, leaving for train by 7 am getting home around 7:30 only to eat dinner and leave for a fire house meeting - he’s a volunteer. This happened at least 3-4 nights a week plus spending time with the guys on Saturday in addition to running out for every fire call at any time. I felt sad and alone. Well I learned to “live my own life”. I liked it and got used to being home alone or with the kids. I had my space and it was what I learned to accept and like it! Now he wants to be with me!!! All the time and I resent it. Where was he all those years? No wonder I’m annoyed! So now that I understand why, I have to figure out how to cope with it! Thanks all.

Jeanne C.

The shadowing is definitely a challenge. And I think one of the hardest things is that past issues and resentments don't go away just because our LO doesn't remember or understand them. Please let me know when you figure out some ways to cope. I know I struggle with the feeling that my life is on hold.

ImMaggieMae

JC5, I suspect it is not only the big change from spending so much time on your own before and now having little time to yourself, but having to deal with all the difficult symptoms that go along with the shadowing. You’re probably unable to have a real conversation with him because of memory issues and confusion. Our normal conversations are usually about making plans, looking ahead and sharing thoughts about incidents that happened while we were apart doing other recent things. This disease robs us of all that. We typically have very little time apart, we can’t make plans together and we don’t have many good things to look forward to, only disturbing things. Maybe your annoyance has more to do with the loss and uncertainty. It’s easy to get annoyed with our loved ones when we see all these changes even though we know intellectually that they have little if any control over the changes.

I think most of us deal with these feelings and I don’t know how to cope with them either. We do the best we can in an impossible situation. I think your frustration is completely normal. I wish I had magic words to make it better for all of us.

Denise1847

Hi JC, Your thoughts and emotions resonate with me. I am pretty sure that my husband would not stay with me if I was the one with the disease. He left me to play golf when I was bed bound due to a possible miscarriage, he threw away the only picture I had of my stillborn baby and cheated on me while I was pregnant. JC, some things still come back to haunt us. Still, I feel compassion for him.

I have come to realize that I am angry about the situation, and it doesn't help me to stay angry or resentful. It will tear you up. The feelings of being stuck, shackled and not knowing how long we will be imprisoned has turned my focus on my survival (mentally, physically etc.) and prayer. Instead of caring for my husband just for his sake, I pray every morning to give me the attributes I need to be the person God designed me to be to deal with the day. It has helped tremendously. That is, I do it to honor and glorify God.

gampiano

JC5,

There can be another way to look at this. Your husband, with his self involved behavior unintentionally gave you the gift of self reliance and independence. You became your own person, and are comfortable with yourself.

So, we have to use our problem solving skills that we acquired to self serve now. If you can, hire someone to look after him while you leave, and don't look back when you're pulling out of the driveway. You need to have time for yourself, even if its just to sit in the library.

Been there, am there,

Maureen

White Crane

JC5, Reading your post brought back a lot of memories for me. Before Alzheimer’s, my husband spent most of his time birdwatching or working in the yard. He would get off work, come home, and either go outside or go birding. I wouldn’t see him again until supper. After he retired, I thought we could spend more time together, but he always wanted to get a real early start on his birdwatching. Like you, I developed interests of my own and was quite independent. Alzheimer’s has changed that. He can no longer drive and no longer recognizes the birds. I have at times felt a lot of resentment toward him. Over the years, I’ve learned in order to take care of myself I needed to forgive him and to accept the reality of who he is now. When I do this, I find myself feeling much more peaceful and much more loving toward him. I can’t do this alone though. I need God’s help. Sending hugs.

Brenda

trottingalong

I, too understand what you are saying. My DH is very needy, always wanting to be touching me, holding my hand, etc. My world has shrunk so much. I’m lucky that I have had a routine for years that allows me to leave for two hours every morning. I treasure that time. My DH was always a homebody after getting off work, and we laugh all the time. As he feels more and more stressed that he can’t remember things, he clings to me. I would just like to be able to leave his side just to work in my yard. All that is difficult.

tetwoman

I also am experiencing the same situation. I find I am bouncing between anger ( and sometimes rage) and deep sorrow, and the anger is easier because at least I'm not crying. I am trying to be proactive and eliminate stress points ( I put a padlock on my clothes closet to stop DH from wearing my stuff). I agree that we caregivers have put our lives on hold, and that is so frustrating - as well as the fact that there is no conversation, no give and take and a degree of self absorption that still surprises me. Reading the other posts here is very comforting and calming for me. Thank you all

LindaLouise

I agree that reading the other posts here is so comforting. We are a year from my DHs diagnosis of moderate dementia - 13/30 on the MoCA - and the first time I was referred to by the dr as a caregiver. I knew in my heart that I had been in that role for awhile, but the reality of hearing it from a dr took my breath away. I'm trying to be proactive as far as locks and learning as much as I can. There is so much to figure out, so much unknown and the fact that I now need to resort to fiblits in order to accomplish things is hard. I feel sometimes that I basically need to play acts most of my life, so the emotions I really feel don't impact my DH and cause his emotions to capsize us both!

I'm still in awe of how little support there is from our doctors for folks in our situation but am beyond grateful to have found this site and everyone here...

Kibbee

I can identify and sympathize with so much of what you all had to say. That feeling that time and opportunities are ticking by while I am stuck and standing still…ugh. The worst. When (if) I am done being a caregiver, I hope I will be able and healthy enough to travel and do things I cannot do now.

The lack of any meaningful conversation. We talk, but it is mostly about things relating to his needs, such as… What do you want for breakfast? Are you warm enough? Do you want TV or a movie? I still tell him about things that are going on, and he listens, but there’s not much in the way of a response so I it seems like he doesn’t really get it or relate to it.

On the upside my DH is generally happy as long as TV or movies are playing, and the food keeps coming. He’s content to spend some time alone, so once his needs are met I have time to myself for house/yard work. He is non-mobile, so really cannot shadow, and also cannot get into things and make messes. Thus far he’s had none of the behavioral issues that are so often a challenge for caregivers.

So I try to hang in there by keeping things in perspective. I also hire caregivers from time to time so that I can go out with friends once in a while and feel normal. Well, kind of. Sigh.

Drapper

I am in the same boat as all of you. It is hard, but I also know it is my choice to be a caregiver. There are people who abandon their loved ones. I think those of us on this forum are all trying to make their lives better, while not maintaining ours. (Physical harm issues fall into a different category )

Thinking of it as a choice makes me less of a victim and a better caregiver. I have found the Dr Natali and the Careblazer program she runs is helping my emotional state tremendously. If you haven’t looked into it, I would encourage you too. It is more solutions oriented than other things I have seen. It has changed my attitude around.

Drapper

Here is Link if you are interested

https://www.careblazers.com/

Pathfinder52

And the answer you learned long ago, is the answer today as well -- Live Your Own Life! That can mean many things to different people but for me (10 years and counting with this disease) as DH slips away, I've been busy building my own life. As I anticipated early retirement (earlier than I'd have preferred) I went back to graduate school and got certified as a Health & Wellness Coach. I launched a small private practice (just months before the pandemic locked us all up) and that has sustained me since 2019 as both an Alzheimer's spouse and a business person. Hubby is still with me, he asks me every day, "What happens to me when you go to work?" never remembering that I'm retired and work here, from home. He also goes to daycare 3 days each week which affords me 6 hours on each of those days to run my business unfettered. The aide at daycare also manages his weekly shower (a godsend!) so, as you learned long ago -- LIVE YOUR OWN LIFE until your free to make all the additional choices you might care to make!