Am I Wrong to Feel this Way?

Dragonfly100

Hubs & I live in a remote-ish part of Colorado. We like our solitude... I don't go into town much. I have no support system. Kids aren't around for the most part. I've suffered from depression my whole life.

So, with that background, am I wrong to reach out to family/friends when he does something that wigs me out? I asked him to open a gallon of paint so I could finish a repair. He mangled the can so badly! I mean, there are holes in this thing! He's been destroying more & more things trying to fix them. I laughed it off, thinking it was kinda funny in a way, but, as I go about painting the repair, I start to cry thinking about all of the money he costs trying to "fix" things, and it's just another gut punch that I'm losing him. As I'm thinking that, he pulls a chair out and is ogling me like I'm on a strip pole.

The only ALZ gathering here in town talks about church, and ministers, and that's not what I'm there for. I'm all alone!

BPS

I don't think you are wrong to reach out but don't have to high of expectations from others. I think some people will not understand the situation thinking it's not that bad, but they are not living it day in and day out, and others may not be able to handle it. Asking for help is important knowing not everyone will be willing. I had one son tell me that he just didn't know how to deal with it and I told him that I don't either but I have no choice, He still is no help, he calls or comes by when he wants something, but no support. Don't get discouraged because I think there is help out there it just may not be where we thought it would be. I was surprised who I can count on and who I can't.

Jeanne C.

I'm sorry you and your husband are having a tough time. Maybe try reaching out to the helplline (number at the bottom of page) and ask to speak to a care consultant. They were great about getting me started on finding help and planning next steps. This is a lot to deal with. You're absolutely right to seek help. And please take care of yourself.

Quilting brings calm

I note that you like your solitude…. But that’s part of why you have no support. Are your children estranged or just not living close to you? What do you do when you need to go to town? Does he stay home alone? Does he wander? What if he walked away from your place while you were gone or away from you when you were in town? What if you get hurt?

There's really no good way to be a caregiver in isolation. It’s hard enough when you have help. For example- my parents live in AL and my mom fell out of bed and broke 4 ribs. I had a knee replacement the next day. Without the AL, who would take care of her? M1, a medical professional has a wife in memory care- he just found out he has to have surgery. He’s scrambling to find his own care. Jo C, a caregiver here, developed her own medical issues.

You obviously are not going to get support where you live. Please consider moving closer to friends and family. So that they can help you when you do reach out to them.

mrspgee

I hear your pain and you need to have a support group where you can openly discuss your feelings and get validation, comfort and understanding. ALZ Connected is a source to start with. People who are going through similar situations are as lost as you are and we can find some relief in educating ourselves as to what is, what it will become and understand the toll it takes on all caregivers. Do reach out to the ALZ Association, any chapter (toll free number) or online. They will provide you with information to find support. If you have access to a computer, there are hundreds of websites that help to educate and offer support. Stick with reputable entities, don't fall for scams that only want your money and slowly strengthen your armor with ways to manage the different scenarios as they present themselves. There are lots of people who are willing to lend an ear by caring and understanding. Just that alone can be very healing. You may find support from the least likely place or person. Family members are sometimes the worst enemies. It's hard to deal with the emotional side of ALZ. You lose a little of your loved one every day until he/she is no longer in his body. Be kind to yourself. Find an activity to nurture your soul, be it sewing, gardening, painting, reading, whatever. Try to share what quality time you have with your DH, jig-saw puzzles, baking cookies, folding clothes, light gardening, anything that will keep him engaged. Find your happy place and slowly heal yourself and be better able to deal with the challenges. There are good days, not so good days and really bad days. I hope you will have many good days. My thoughts are with you.

Denise1847

Hi Dragonfly,

I am so sorry and you are not wrong to feel the way you do. I am on antidepressants and still cry every day. I have learned not to ask my DH to help me unless I am prepared to do damage control. It is such a tough journey. I am fortunate to have some family that is supportive but not necessarily present. I go from being angry at the situation to guilt to profound sadness. May I suggest you reach out to an on-line counselor who can listen to your feelings. It does make a difference to be heard and validated.

Please keep in touch at vent to us. We get it.

Iris L.

You should not ask a PWD to do any task that requires dexterity or can cause problems if not done right. They just can't do it.

Iris

housefinch

I think cultivating some support would be a good idea, because as your husband becomes less of a spouse and more of a patient, you will need one. Also, you may want to consider safety and wandering risks if you live in an isolated area. If your husband begins wandering and gets lost, will you have access to Search and Rescue services, etc, for your county? I live in CO and there are some pretty remote, inaccessible areas that, in winter, would not be good areas for a PWD to wander. Sending you a virtual hug and hope you find some support.

ghphotog

I don't have much of a solution for you other than possibly packing up and moving closer to family or somewhere less isolated but you are going to need help soon.

I know the feeling of being alone in this journey, feeling isolated, feeling nobody cares enough to help. Well meaning friends offer but when I take them up on the offer to help they usually have other "important" reasons whey they can't. I've been trying to care for both my frail and elderly mother as well as my wife for the last 5-6 years. I've pleaded with my brother to take over our mother's care but he wouldn't do it even though he has two grown daughters and and capable wife, he just would never budge but left that burden for me to carry alone.

Even though my mom is in MC now I'm still her caregiver when she has to go to the hospital, needs Depends, doctor's appointments or any other thing she needs and trying to work out logistics on what to do with my wife when I have to take my mom is very difficult Many times I have no choice but to take my DW with us.

I don't know how far out of town you live but maybe there are some senior services that can provide help for you, if not you may not have any other choices but to place him in MC somewhere.

CindyBum

My DW and I also live very remotely. We like our solitude and the natural beauty.

I say reach out to family and friends! You never know who might show up as a supportive ear. Of course, they may also disappoint you in their inability to take it all in. But, don't ask and you'll never know.

This board has been the most amazing support system for me. I can say things to all of you and know you'll understand what I'm going through. I still need this board even though my friends have been quite supportive of me on the phone. But, my friends just don't know what you'all know about the day-to-day pain of it all.

Maryanne8

I'm new here. But I too struggle with depression, anxiety, & PTSD. I used to be able to lean on
my Lovely Other Half to support me. However, I really no longer can as she has Dementia. I have a psychiatrist, am on meds, and have a therapist. I recently joined an online group for caregivers of people with Alzheimer's. I hope this is the right place to share too. I have been trying meditation free on the internet. It seems to help me. What I really want to say is I hear you and you are not alone.

toolbeltexpert

Dragonfly you are in a tough situation for sure. Being depressed only adds to the stress you are under. You need to take care of you first no one else can do it. I know how hard it is. I had let stress take 38 lbs in about 6 months. It was only when I made the decision to take a break from caregiving even though I had already placed my dw. It didn't end just because I placed her! If you can get some respite care so you can recoupe it will make the world of difference, I had been given this advice so many times from our forum friends.

You do need to think about placing as well. I lived in a remote part of middle tn with 20k acres of conservation land right around me. A woman with Alzheimers did walk into it and a week later they found her. I helped search that whole week from sun up til dark. So I really considered that and placed my dw when things were going south. I was all alone, our families were 1000 miles away.

Sorry your going thru this but the best help I got was right here. Someone always seemed on when I needed to vent or seek guidance.

My prayers continue for you and everyone on here.

Stewart

tgeno

Because you are isolated, one thing I can suggest is to call Alzheimers Asociation's toll free hot line and ask if there are any support groups that have online meetings. I live in Boulder and have the benefit of several support groups where I can attend in person. They have been tremendously helpful. There are support groups that have online meetings and even hybrid groups that meet both in person and online. Don't give up.

Lorita

Morning, Just read your post and can identify with what you're going through. My husband had vascular dementia, diagnosed in 2008 and I lost him in 2015 so I had seven years of caregiving after the diagonsis. We, too, live in what one of my friends calls "the boonies". But, we loved it and wouldn't have thought of moving to town.

I knew he was going through something and after the diagnosis I had no idea what to expect. This forum saved me - all the kind people on the forum told me what to expect and how to deal with it. We had no relatives nearby so I was his sole caregiver. One thing that helped so much was something a friend told me. We have a fenced in yard with six gates - he suggested I get locks for each gate and keep them locked so Charles couldn't get out. He had wandered off a couple of times and a neighbor brought him home. So, if you have a fenced yard, get locks and use them. It'll give you peace of mind and keep him from wandering - which can be very dangerous.

Unless you have close relatives that really want to help or friends that want to help, the caregiving is up to you until it gets to be too much. You'll know when that is. It can be a hard row to hoe but you can do it. I'll check back in from time to time to see how things are going. Another thing you might do is get him into the habit of taking an afternoon nap - that can either be your "me" time or a time when you get some rest, which you'll need in the future. All of the suggestions the others have given you are very good - we all learn from doing and each situation can be different. Best wishes to you.

Judy.T.

I too live in Colorado. There is a support / educational group that does online and in person. They may be able to help.

https://dementiatogether.org