Don't know what subject to put

White Crane

It's been a while since I have posted anything.  Each time I think I'll post something, something else happens and I think maybe that's the thing to post about.  Then the next day it's something else.  Things haven't been too bad recently but there are some things that are hurting me very much.  One of those things is DH attitude toward our two oldest sons...mine from previous marriage.  He has been the only father they have ever known and he has always treated them as his own children...never once in over 53 years referring to them as his stepsons.  Now all of a sudden they are those sons of yours... they're not my sons. It hurts me so much to hear him say this!  Not only that, he now claims the oldest son has cheated him and stole from him in the past and he doesn't trust him.  This is untrue!  I know it's the Alzheimer's causing this but it's hard for me not to defend my son.  Little good it does!  DH just smiles that awful little smirky smile of his and continues to believe his delusions.  I haven't told my sons about this but it has come out on occasion when they have visited.  It angers as well as hurts me.

Last Thursday we had our second Covid shots.  DH was fine afterward.  Not me!  I got every side effect listed plus a couple they didn't.  I was so sick by the next morning I couldn't get off the couch.  When I asked DH to please fix me a cup of bouillon, he didn't know what I was talking about.  I had to tell him step by step what to do...did you know there are several steps to making a cup of bouillon?  He was so helpless and flustered.  Later, he couldn't figure out why I hadn't fixed him any lunch.  He finally got out the carton of ice cream and ate a big bowl.  That was fine with me.  I was too sick to care.  It really brought home to me though just how helpless and vulnerable he is.  I feel so sad for him...and for me.  And it scared me, too.  I, too, am vulnerable if I get sick and can't take care of myself.  DH has a sister I can call in an emergency but if we needed overnight help, I would need to call our/my second son who lives 100 miles away.  It's a scary thought that I might need help and DH would not know what to do or be able to cooperate with the help. 

Thank you for listening to me ramble on.  I care about each of you and read your posts.  It's just hard for me to have private time to respond.

Brenda

Myralw

Hello Brenda and others,

I too have recently come to accept the reality that I am quite utterly alone where my DH and I currently live. I have a couple of wonderful friends, but they have a life and husbands, etc. I am planning to resign my government job in a few months. I am soon turning 60 (DH is 69), but I can fortunately afford to defer my retirement for a few more years. Perhaps I’ll find online virtual work. Nevertheless, my fear is that if something happened to me, DH wouldn’t know what to do. I have messages about this everywhere, his wallet, his GPS watch, my cell phone.  But I contemplating moving this summer to TN where my daughter, granddaughter, sisters, and elderly mother all live. I just feel like I’ll have support of family that I have shared history with. I don’t know if this is the right thing for us, I also fear my DH will decline substantially as a result of a move from our home of over 10 years. He has two sons, one that can help on occasion, he recently came and stayed a week with my DH so I could go to TN to my daughters wedding. He lives in a different state too. That’s when it really hit home for me how lonely I am now. 

I just wanted to share the common feeling and fear of being alone, with a husband who is completely dependent on me. Have any others made a major move with their loved one with dementia to be near family? How did it turn out? Am I crazy to want to do this? Brenda, would you consider such a change? 

Thank you all. I care about each one of you as I read your stories and struggles with this horrible disease. 

Myra

Nowhere

Brenda,

I think I’d title the subject “vulnerable”.  You describe your husband and your situation (all of ours if we’re honest) eloquently. This disease causes one of us to become more responsible, and the other, conversely, dependent, and in time brings us all to our knees in vulnerability to dementia’s far reaching effects. His eating ice cream while you took care of you was necessary as you state. Thank goodness he could forage.. There will come a time your sons will be strangers in his eyes. For now they are yours. Maybe gently let him know how much they love him and retell him the years he helped to shape them into fine young men. Glad you’ve both received your Covid vaccinations!  

Ed1937

Brenda, I'm sorry you are going through such a hard time. I think your sons are old enough to understand about the disease. We had an adult son living with us, and my wife was really mean acting to him. I explained to him what was going on, and we were able to live with it for some time. He understands, and even though he moved out for a while, he is back with us now. But for some reason she is not acting like she was with him. I don't think you should try to defend your son, but I do think you should have a talk with him, and make sure he understands that the brain is dying. I know it's hard, but you might be surprised at how things will get a little better.

As far as being vulnerable, I think we all understand that. I hope you can get things figured out for that. Maybe a medical alert that will call an ambulance if needed?

Please let us know how things are going for you.

Ed1937

Myra , we had a member (can't remember who it was) who relocated long distance to be close to family so help would be available. But IIRC, the family was pretty distant to them after the move. I'm not sure we can expect help from family when relocating. We just don't know how they will react. So if you make the move, welcome any help you can get. Just don't expect it.

LadyTexan

We have made two significant moves since DH's dementia started causing us problems in 2016. 

Move one was from Lampasas to Austin Texas. Geographically the move was 75 miles. It was emotionally difficult for DH because we left a home he had lived in for 20 years. He had rehabbed the vintage home with great care. The reason for the move was that he could no longer work at his profession which was located in the rural area where we lived. I worked in Austin at the time and was commuting the 75 miles (each way) 5 days a week and was not comfortable being so far away from him in the event anything happened at home while I was at work. He was still able to be alone during the day. We moved from a 2,000 square foot home with yard to a 600 square foot apartment in a large CROWDED metro area. The benefits were we were very close to his health care team and great medical care. Additionally, my office was only 3 miles away from the apartment and I could easily get home if he needed me. Plus I did not spend 2 and 1/2 hours commuting everyday. He hated the apartment and giving up "his house". The biggest benefit is it allowed me to continue working my job with the State of Texas until I satisfied my retirement eligibility requirements. During the 2 years we had the apartment he was mostly miserable and rarely missed an opportunity to remind me that it was all my fault. DH's adult son also lived in Austin. It is very important to note that DH's adult son was not helpful to us (with the exception of one hospital event). He rarely visited even though I was very specific about needing his assistance. DH and his adult son are now estranged. They haven't spoken in over a year. I have given up trying to build a bridge between them.

Move two was from Austin to Kerrville, Texas. Geographically this move was 103 miles. We moved from the 600 square foot apartment to a 1,500 square foot house that was remodeled to include many aging in place amenities such as an additional bathroom with  roll in shower, sufficient and appropriate lighting, safety bars, no carpeting, bidet toilet, and gentle rise steps. Our mortgage payment is about $900 less than our small apartment rent payment. We live within the city limits of a much smaller and slower paced town. DH no longer feels overwhelmed and crowded by the traffic and people of living in a big city. Two tremendous benefits of living in Kerrville is that I am now retired and am available 24/7 for DH. In addition, we have a support system that includes my parents and my two living siblings. This is a huge deal for us. For example, I torqued my back out earlier this week. This morning I woke up in pain and somewhat groggy from the pain meds I took at 3 am. I called my sister and asked for help. She brought breakfast. Then put a pot roast in the crockpot so we will have a meal for dinner. THIS WAS A TREMENDOUS HELP!! DH is very happy in our (new to us) home. I appreciate the lower cost of living. Most importantly, we have a support system here that we did not have before.

That has been our experience. 

Move one was miserable, but necessary. Move two was carefully planned and has worked out better than I ever imagined. Like other caregivers, I am vulnerable to illness and injury. I am blessed to have family that will step in to assist. 

DH and I both wear medical id tags. If I leave to go to the store or pharmacy, DH wears a life-line device that can call for emergency assistance if he falls or simply pushes the button.

There are no easy answers here. Family dynamics, economic restrictions and geographic limits are challenging. I am grateful that we were able to relocate to a location that serves us well.

Rescue mom

It took me a long time to realize how so many things we think are “one step” or done easily/automatically, are so complicated for our LOs—like fix a cup of bouillon, or bring in groceries, or take out trash, etc etc.  Getting other people (like family) to see how PWDs struggle with simple things, is almost impossible.

My DH utter lack of empathy, or understanding how I might need help when sick or home from hospital, was one of the first things I saw of his Alzheimer’s. It was so unlike him. But yes, we caregivers are utterly alone. I have started this weekend looking for more home help, for just that reason, to get a head start for serious need.  Finding the right person is hard.

M1

I am feeling this too, so aware of how no one else knows everything I do and how helpless she would be if something happened to me- not to mention who would take care of me . My daughter would step in, but she had two toddlers, and my son is across the country in Seattle. I wrote down a whole set of care instructions, phone numbers, etc. and for her eightieth birthday sent it by email to the three folks I thought needed it- doesn’t help to have it on my computer if no one can access it there.

White crane, I can only imagine how painful that rejection of your children must feel. My partner is starting to forget family members so I see this coming our way too.

abc123

White Crain, I'm so glad you posted! I have been thinking of you. I'm really sorry that DH is being mean and difficult. I find it amazing what a demented mind can come up with. He cant fix a cup of broth BUT he can be cruel and hurtful. I hope the boys never hear him say that. Is there something else that could be bothering him and the only way he can communicate is to be a prick? Do any of his meds need adjusting? Maybe its time for his doctor to prescribe some happy pills of some type? I hope you both have a better day!

White Crane

Thank you all for your responses and insights.  I appreciate each one.  Myra, since I have lived in the same city all my life, I would not contemplate a move.  I'm glad others can share their experiences with you.

Nowhere, thank you for the reminder to gently retell DH about the ways he has shaped our/my sons lives...and he has!

Rescue Mom, I hope you can find the home help you need.

M1, my DH is also 80 years old.  And yes, it hurts so much to hear him talk about my sons.

Ed, I try not to respond  or get upset in front of DH when he talks mean and delusional about my sons but it's really hard! 

 I'm doing better now and feeling better physically so that helps.  He is still being grumpy this week and doesn't seem to feel good.  The idea of a medical ID is good.  Thanks for suggesting it.

abc123, thank you for thinking of me.  I appreciate knowing that.

I am so grateful for this forum and all of you.