How do I deal with anger?

Holler Hider

Background: DH 82, COPD, CHF... 4 yrs ago I noticed his failing memory. Doc said it was just ADHD. Two years later, doc said dementia. He's been on Aricept for 6 mos with no benefit seen (conditioning worsening). He can still be left alone, but I don't know for how much longer. All the usual: asking same questions over and over nonstop all day long - what's the day, the date, the temp, the forecast... every day all day long. Anything we watch on tv is a waste of time due to him asking questions - who was that lady, why are they saying that, what's that say on the screen? He forgets prominent peoples names (president, grandchildren, etc). He gets overwhelmed if any task contains more than 3 steps, or if he has to choose what to eat from a menu with so many options. He changes his mind on what he wants to eat after I've already fixed exactly what he said he wanted. All of you reading this know what I'm talking about. So, giving any more examples is a waste of time. Here's my problem...

I have NO close support. None. He has 4 kids (2 living close by) along with 5 adult grandchildren that all live withing 40 miles. I have begged, literally cried, asking them to come down and visit. DH is getting more and more anxious and refuses to go to family gatherings. Of course, being the "outsider" I take the blame. His kids refused to admit that their dad was as bad as he is. Then this past summer he didn't recognize his exwife (their mother) and they finally had to face reality, but then I was asked why I didn't tell them he was this bad!!!!!! I had tried, but they excused everything.

So, I thought, OK, now they understand, now they will visit. Nope. He had a heart attack this past spring and his daughter came down once. His son came down about 3-4 times to do some work. But nothing since April & June. Daughter will call once a week, son about once every other week. 

I've given up on them. I can't keep begging them to show their dad any love. I'm through - for my own sanity. My sisters will listen to me, but I feel like I'm imposing on them since they have their own issues.

I've tried talking with a co-worker but when I vent my frustrations, all I get back is that I have to understand he doesn't mean to do the things he does and I need to be more understanding. REALLY????

I am understanding with him. I don't yell or get snippy (well every once in awhile) because I do understand he doesn't have control over it. But that doesn't mean MY frustrations or fears or sadness, or whatever feelings i'm having are totally irrelevant. 

I feel like a failure all the fricking time. I'm a failure because we don't visit his kids for holidays (because he won't go around crowds, and YES I've explained that to them), I'm a failure for not being happy all the time, a failure for not being able to get him to eat more (he's lost 30lbs), I'm a failure that I let him drive (rarely, but just to the dump (6 miles on rural road) every two weeks, but I'm also a failure for letting him do more things that will give him some pride in accomplishment, I'm a failure for "making" him mow the grass (with a riding mower) but also a failure for not letting him haul in logs from the woods or use the chainsaw to cut firewood. I'm a failure for still working part time and also a failure for not having more money to be able to afford the things other people think we should have. 

I'm just a failure at everything and heaven forbid I lose my smile and sweet disposition.

I have just made this whole rant about me. Yet he's the one that is suffering. And he knows it. And it breaks my heart. Every darn* day. 

Ed1937

Holler, welcome. Sorry you have to deal with this too. But you found a good place here where people understand where you're coming from. And they will try to help in any way they can. They will offer tips, share experiences, share what works for them, and be supportive of you.

You will learn a lot from reading all the posts you can here. There are also videos on youtube that can help in many situations. Two of my favorites to watch are Teepa Snow and Natalie Edmonds. If you search for Natalie, you will probably get better results if you search for "careblazers". Give them both a try.

I am going to ask you to do something. Come back here tomorrow, and tell us three things that are positive in your life. I understand that it feels like there are no positives, but there are. We "get it". It's hard. During your day, you are going to have roughly fifty percent of things that are positive, and another fifty percent that are negative. I know I sound like I'm crazy. Some things will be overwhelmingly negative, and that's why you don't see the positive side of things. Our brains steer us to the negative side. It's just the way we're wired. So I'm asking you to tell us three things that are positive. Just try it. I'm hoping to hear from you tomorrow, and it doesn't matter what those three things are.

Cherjer

I am so sorry you are dealing with the disappointment of your DH 's chidden. I have only one child...a son aged 42 and always regretted we were not able to have more children but our son has been wonderful with his dad and me. 

Could you have one of his children spend time with your DH while you take a break? Maybe they will realize what you are going through. I find it so terribly sad and unfair to you having no help from his children. 

Please treasure what he can do now...it is not important that he cannot remember prominent names but at least he is able to watch tv! I wish my dh could focus on tv, and I so remember the tv on constantly and thinking of the power expense...stupid me. Now DH has no interests at all but going for a drive pacifies him. At least he can ask  you questions...treasure that now and answer the best you can. 

My  husband is almost 80 and diagnosed at 73...we had many good years together after diagnosis but in the last year AD has hit us hard. I wish I could take back all my complaints that were simple a few years ago.

Having said all of this..his children need to step up and help you. What goes around comes around.

Cheryl

Pat6177

Holler, this forum is a great place to come and vent. You will be heard by people walking the same path as you. We can’t fix it for you but there will be helpful suggestions and compassion. My DH and I don’t have children so I can’t speak to that issue. But I can say that even though you feel like you are an all around failure, in reality, you probably aren’t. Nothing in life has prepared us for dealing with dementia so there’s a hefty learning curve. Be patient with yourself. And if you have questions about how you are handling things, you can come to this forum and get some feedback from others. And read a lot of the posts here. Most of what I know about dementia, I have learned here. 

If you have not already done so, please get all of your legal documents in order. See a Certified Elder Law attorney (CELA). In addition to making sure all of the documents are in place and up to date, the CELA can discuss the issue of qualifying for Medicaid for long term care. The sooner you start preparing for this, the better. And remember, if you have named your DH as your financial and/or medical power of attorney, you may want to change that.

Jeff86

Thank you for sharing your story, holler hider.  Sorry you have the need to find yourself here.   I want to respond to two issues you raise:  support and failure.

Caregiving is a lonely experience, and you’re right to feel the need to be supported in this difficult journey.  This forum is a great place to find support.   Easy acceptance, complete understanding, empathy, practical advice and solutions from caregivers who have learned by doing.   

I might also suggest that you contact your local chapter of the Alzheimer’s Association to find a local support group.  Some are now in person again, some are on line/virtual.  You will likely get great information on local resources as well as additional support from fellow caregivers and a knowledgeable and sympathetic meeting facilitator/support group leader.

Support from family and friends is another matter.   Most caregivers experience some disappointment on this front.   We find that our circle of friends shrinks, and some family members limit their involvement with the PWD.  Others step up to the plate.   Early after diagnosis, I had a heart to heart with DW’s children, urging them to spend time with their mother while there were still opportunities for good communication.  They didn’t: they’re not local, they’re busy living their lives, Covid happened, and so on.   On the flip side, DW’s brother has been tremendous, calling, visiting, and so on.  Of DW’s closest friends, one has disappeared and the other has hung in. 

 I was initially hurt and disappointed by this, but I came to understand that for some people this is, for various reasons, just too hard and they can’t or won’t travel this difficult road with us.  I’m sorry they have dropped out but not angry…it’s important to focus on those who are with us and let the rest go.

As for failure….no, no, no.   This disease brings loss upon loss, and you are responsible for none of it.  Nor can you alter it, or fix it.  It’s the disease that makes PWDs uncomfortable in noisy environments and in time unable to travel.  It’s the disease that causes PWDs to lose weight.  (My DW has lost more than 20 pounds this year.).  Grief is so great with this disease that it’s impossible to be happy all the time.

You can’t own everything that goes wrong and everything that is slipping away.  You are trying your best to be a loving and compassionate caregiver.  You’ll stumble at times as we all do.  Over time, this disease challenges us as it takes our LO away from us.  It’s inevitable, and it’s not your fault.   Try to be kind to yourself and forgiving, to yourself and others.  And keep posting here, as the spirit moves you.

Paris20

Holler hider, we understand what you’re experiencing. Many of us came here out of desperation, not knowing what to do or where to turn. This is a non judgment zone so you can say how you feel. We have ALL been angry. Even though we know it’s our spouse’s disease talking, it is very hard to hear the repetition, the frustration, and the inability to grasp what’s happening to him that make us want to tear our hair out.

First I’d say don’t beat yourself up. This is not your fault. We are all human and there’s just so much we can take. Guilt never solved anything. Second, even though my children have visited, they live far away so I learned early on that I needed to turn elsewhere for support. I learned the hard way that you absolutely cannot handle this by yourself. I wound up in the hospital because I had thought otherwise.

Now is the time to look into local services. I was able to afford an aide for my husband. There are respite services and support groups, some online, so that you can better cope. You should also see a lawyer to make sure your husband’s finances are in order before he can no longer make decisions. Power of attorney becomes an important issue. Perhaps his children would have more interest in that.

Finally, please feel free to come here to comment, support, rant, or inform. That’s why we’re here.