Does therapy help the caregiver?

michiganpat

Does therapy really help the caregiver? My DH is in early stages of dementia. I find myself crying several times a day, because of sadness. I saw a therapist 2 times but quit because, really, what can she do? She can't change the facts and she can't make me any less sad. Only time and my coming to terms with what is happening will help. Am I looking at this wrong? Is this sadness normal? I think it is. How do others cope with having a spouse with dementia? I tend to be an optimist but this is really dragging me down. I would appreciate your thoughts. Thank you

Ed1937

As soon as my wife was diagnosed, I fully accepted our future. I had been a member of this group for a few months before diagnosis, so I knew what was coming.

As far as therapists, there are good ones and not so good ones. We have a son who started therapy probably 20 years ago, and he's seen both. Through the years he's probably seen a dozen therapists, and there were only 2 who really clicked with him. One of them moved out of state, and the other is available.

BethL

Sadness is normal. Crying several times a day is probably not normal, nor is it healthy. Therapy and an antidepressant could help. Support groups where you can talk with others going through the same things can help too. Reach out; help is available.

Rick4407

Hello Michigan.  As Ed1937 said, it could be the therapist is not a good fit.  They all have different strengths.  Antidepressants are also pretty common among caregivers to help with the day to day sadness.  The hardest thing for me to make this road a more bearable was just acceptance.  It is challenging but looking for and enjoying the small victories is as good as it gets for the immediate future.  Rick

Ed1937

Rick4407 wrote:

The hardest thing for me to make this road a more bearable was just acceptance.  

I really think acceptance is key. If you don't/can't accept what is happening, you will be in for a much harder journey than if you accept it. When you don't accept it, it's really hard to see anything good that happens. And there are many good things that still happen, even if it doesn't change the future. Those are the things you have to focus on.

PlentyQuiet

Yes, it helps. 

It gave me someone to dump all the emotions out onto, and there are so many emotions. Someone who was not in any way involved with us and so could listen to everything I needed to say without judgement (neighbors and distant friends), adding to their own burden (family and children), or giving me "helpful" advice they found on the internet (absolutely everyone else!). 

I didn't expect her to fix anything, this situation is unfixable, but as a person to listen and respond, in real time, she was so valuable. It was also nice to have a person who's first concern was how I was doing. 

She gave some practical advice on coping methods and promised she would let me know if I should talk with my PCP about antidepressants. But mostly she is just THERE for me, but in a non-involved way that is simply freeing. 

caberr

I do believe it can help.  I feel just to sit and talk one on one with someone who listens is a big help.  DH was diagnosed with ALZ in 2018 after years of testing.  I cried a lot when he was diagnosed, and sometimes still do.  

But I have to agree with others.  Acceptance is the best way to get through this.  I have times when I accept it and other times when I feel so cheated for me and him, which really does no good and only frustrates me more which in turn affects him.  

Marie58

michiganpat wrote:

How do others cope with having a spouse with dementia?

Faith is my biggest coping mechanism. I get my strength and hope from God.  But that doesn't take away the sadness, the daily caregiving, the stress, etc. But a therapist doesn't take all that on either. So, I talk to my Mom at least weekly, she's kinda my therapist haha. I have a son and a couple close friends that support me in many ways. I go to a support group. And this site has been invaluable. Grief is real and I believe we start grieving with diagnosis, if not sooner. I cried SO much in the beginning, and I still cry. There's anger and denial. But reaching acceptance was the turning point. It takes time, but like others said, once you're there your perspective changes.

It's still hard, I'm still sad, and I still hate this disease. If you find a good therapist, I'm sure that could be helpful, but everyone and their situations are different. 

Blessings to you.

mrahope

I will add my .02 to this conversation.  I believe that having a person who is not involved and will not judge you can be very helpful.  In talking with a counselor I have also gotten some practical suggestions to ease some of the stressors.  It doesn't "make it all better", but it does make it easier to cope with.  And knowing I have somewhere to "let out" my stress keeps me from dumping on my family and friends.

I concur re: acceptance.  I'm working on it.

Crushed

I have an excellent therapist who has walked me through this whole "process"
 
When DW was first diagnosed I was absolutely consumed with anger hatred jealousy and confusion about why this had happened to my wonderful wife at the age of 58.   She was brilliant, had worked constantly in public service medicine, never smoked or drank, was a wonderful mother and a loving wife.    

I had an almost lethal hatred for anyone who suggested that torturing my family was "god's will"   I was angry at the unfeeling Universe.  I was jealous of the people who got  to live normal lives.  Finally I was confused as to how to mange the disease .  

My therapist worked with with me on all these and other issues. She is a social worker and her whole practice is dementia spouses.  She emphasizes that they are like 9/11 survivors who did nothing to create the disaster, but are left to pick up the pieces. 
When I first saw my therapist she noted that we had been married for over 40 years and I still cherished my wife as  "Wonder Woman"  We had been all over the world, both had enormous professional success, never been sick, two wonderful kids and now grandchildren.  We even had the money for DW's care.   She pointed out helpfully that I was in no way responsible for DW's disease.  She supported my decision to place DW due to psychosis and wandering.  She considered it "facing reality".  She has dissected my loneliness and suggested approaches.    Her advice  supports me when I am visiting the "shell" of  DW.  She helped me think of myself as no longer married since my definition of marriage was a partnership and my partner is gone forever.  
Now I work on how to go on
  

  Goodbye my Boston beauty, farewell my Boston rose
I wish that you were here but I know that's the way life goes
 

I wish that you were here but I know that's the way life goes
I wish that you were here so farewell my Boston rose

https://www.youtube.com/watch?v=3aKvxVYFC3I

   

Bill_2001

Look up Situational Depression.

Dealing with your loved one with dementia is a protracted situation that brings on depression symptoms. If it goes on too long (and this almost always does), it can lead to clinical depression. Truth be told, wouldn't we all suddenly stop being depressed if the situation ended, or if there was real, tangible help that did not cost us our life savings.

I am sure that the right therapist could help. Someone to give you coping skills, or help you get through it. But to me, it just seems like one more thing to pay for, and one more obligation to meet. Caregiving is already overwhelming.

Vitruvius

Please ignore me, everyone else here does. But for me I believe that acceptance is the only way forward. Numbing myself to the situation of DW's dementia and taking each day, each hour, as it comes. Appreciating those moments when things verge on normal and blanking out those that don't. Ignoring those who tell me I need to take care of myself as if this is something I didn't already know. I've stopped crying and steeled myself to the task of caregiver as best I can. 

Memphisdee

Yes I agree with the acceptance part. I am on an antidepressant and it keeps me from crying every day. Still cry occasionally. Luckily I have a few friends that check on me and help me talk it through. I also now have an appointment with a therapist who works with dementia caregivers. She also lets me msg her on pm. I’ve known her socially.  Hang in there. I thought I’d never stop trying to get meds regulated but I’m to point where I don’t think anything is gonna help. 

We’re in the negative stage right now, standing and fretting. Obsession over dishes and garbage. Have to persuade to take pills and get ready at night. It’s all a challenge no matter what stage you’re in. Hang in there!

Memphisdee

Sometimes if people don’t answer you or comment, you need to put a new message on. When I first got on I thought I was being ignored also.

Joe C.

I have been seeing a therapist for 3-1/2 years and for me it’s been a lifesaver. Just having someone I can bare my soul to with no judgement is huge. DW was is mid stage and I was in a very depressed state but talking through my feelings and having someone that encouraged me to make changes that would deal with my loneliness and depression was exactly what I needed. I never expected the therapist to have answers for me rather I have always viewed her as a guide to help me figure out what steps I needed to take and to become comfortable with my decisions.

Paris20

I went to a therapist when my husband’s declining condition changed our lives once and for all. The therapist suggested that I attend her support group on loss. My conclusion was what others have already said. Acceptance is all we can do. Nothing will change the outcome. Once I was able to gain control over myself, knowing that I was in this for the long haul, just as I was concluding my visits with the therapist, she suggested that I get a check-up with my pcp. When I saw my doctor and told her how awful I felt, she suggested an antidepressant. 

In my 70+ years of life, I had never needed an antidepressant and that included two bouts of cancer. Nothing can compare to the role of AD caregiver. I agreed to the meds. I don’t think I could have gone further in this journey without the help of  Zoloft. I freely admit it. And now my soon-to-be 100-year-old mother is very ill. Even my beagle is dying of cancer. The stressors just add up but I’m handling all of it. My advice is to speak to your doctor, explain what you’re going through and how you feel. As you already know, you need to be strong to get through this horror-story and it’s important to take care of your own health too.

Jeff86

MI Pat,

I can’t comment on whether a therapist can help a caregiver as I haven’t, yet, gone that route, but intuitively I believe it would.  The therapist doesn’t take away the sadness but helps you understand how to manage and live with it, I’d expect.

What I can speak to is the abiding, ongoing sadness that comes with being a caregiver for a spouse or partner.  I concur with others that acceptance is important, but what does that really mean, and how does it help?  I wrote a post on this issue some time back.   I’ve never been in denial about my DW’s AD, never experienced anger about it, only profound sadness.  That sadness is, in a sense, a form of acceptance.  

The issue is how much sadness can we live with, on a day-to-day basis.  Every night when I put my DW to bed, tucking her in and giving her a kiss, it’s like putting a very small child to bed.   And I experience grief and loss, almost as if it were something palpable.  

So far, it’s manageable for me, but I think if I were bursting into tears several times a day I’d feel the need for some intervention, whether it’s talk therapy or medication or both.  

storycrafter

There's a popular saying and pithy truism that, "life is change." With any change, happy or sad, loss is inevitable on some level, whether recognized with awareness or not. It's the human condition. Having lived on this earth a few years, I've come to believe our unspoken primal purpose as human beings boils down to ... learn how to grieve and mourn in a healthy, honest, authentic way. To do this successfully, in our modern culture, is not an easy accomplishment.

Caring for a LOWD (Loved One With Dementia) -and particularly one that is a spouse - can't help but give rise to an especially deep and complex Grief. To process such grief, mourning is a requirement. But who wants to feel pain? Sometimes the feelings we most need to attend to as caregivers are ones we most want to avoid. Sometimes uncontrollable events whack us with trauma and difficult decisions to make. Some of us are in survival mode with our loved ones, feeling as vulnerable they are, only in a different way.

Can any one human being in such a situation comprehend all they need to do all the time, or stay on top of all they need to process when they're in such a vulnerable, impossible circumstance? Letting go of mistaken pride and accepting we are human might be our first order of business. We caregivers need our own on-going healing to cope with all that's on our plates.

In my experience there is nothing more healing than having the presence of a compassionate witness. A skilled therapist can fill this role. A kind and trained active listener gives us a safe outlet to authentically mourn. And heaven knows we caregivers must learn to mourn every single day. Processing thoughts and feelings with someone who can be fully present allows feelings to move through us in ways that integrate them into our life. It allows them to flow and transform and evolve instead of getting stuck inside like a damned up river. We could all use a personal counselor/coach/therapist. Finding a good fit can take some doing, but it's worth keeping after it.

Thank you for posting and giving me the opportunity to find more clarity on this. Thanks for tolerating my passion on the subject. I wish I could find clearer words and a better way of saying things, but thinking on this has helped me in unexpected ways. I appreciate you took time to express your thoughts and feeling here.

Best wishes and tender love and care to you. May you, and all of us, find some peace and comfort on this difficult journey....

storycrafter

I realize I didn't respond directly to your question about how do you cope as a caregiver? I don't have more time right now, but wanted to say, I cope by mourning each and every day. I've learned a lot about grief and how to mourn from therapists, classes, workshops, lifelong support groups. I'm now using every single thing a lifetime of practice has given me in my day to day life. It's not easy and I have a lot more to learn.

Each and every day I acknowledge my grief, working toward radical acceptance and radical self compassion. It's not something that can be done overnight. It takes lifelong willingness to attempt to look grief in the face and practice learning how to mourn in a healthy way. I keep making progress with the help of others.

michiganpat

I have said many times "If I could just accept what is happening I could handle it". Easy to say but so hard to do. This is the hardest and saddest thing I have ever experienced. I need to get it together to be able to care for my husband. Therapy again or even meds. Thank you so much for the responses. I have always been able to handle what is thrown at me but this is tough. I think part of the problem is there are periods when my DH acts so normal that I start wondering if I have it right. Then he does something and I know there is something wrong. It is such a roller coaster. When I first used my husbands patient portal to inform his primary doctor of what I was seeing I reread my message and thought to myself "How can you not see there is a problem". Then he acts normal and I second guess again. I always thought the main thing about dementia was the confusion. I was wrong. It is the behaviors and paranoia and delusions also that go with it. God bless all caregivers of PWD and the PWD themselves.

harshedbuzz

MI Pat-

I am sorry that you have a need to be here.

The dementia journey has many stages; each of them bring unique challenges. This early stage can be difficult because some of symptoms of early Alzheimer's can be very subtle- certain personality changes, apathy/disinterest, poor decision making from executive function deficits and only short term memory glitches- making it hard to really be "all in" with the diagnosis early on. I saw this with my own mom; she remained in denial well into the middle stages when she finally agreed that he needed to be evaluated almost 10 years after I first noticed personality and mood differences. I think part of it was her being the frog set to boil in a warm pot of water- she was too close sometimes to see what was obvious to others.

Once dad was diagnosed, it triggered alternating sadness, regret and anger. Dad had mixed dementia and one was a treatable alcohol-related kind that had it been identified and treated earlier might have given him a better outcome until his Alzheimer's progressed further. She was mad at him for doing this to himself and guilty that she hadn't been more proactive in having him diagnosed. She was sad at the loss of her snowbird lifestyle/social network because she had to move closer to family (basically me). And she was bitter about all her friends who were enjoying their golden years in a carefree manner despite the reality that they'd had nearly 20 years of doing exactly as they chose. 

One of the best things we did was get her a psychiatrist for psychoactive medications and a talk therapist. This worked out really well. Mom and dad shared a PCP who tended to put what was best for dad first which wasn't always appropriate given that my mom was almost 80 and had a lot of medical issues of her own. Having the psychiatrist gave her a medical professional who always had her back and best interests front and center. The psych gave her a low dose SSRI to help her function and feel better. Both the therapist and psych gave her a safe place to vent and process things as well as strategies for self-calming. I feel like the therapist was an OK fit early on but not so much as time passed; her specialty was relationships and divorce and she was a tad more intense than was comfortable for my mom. 

Another thing that really helped her was an IRL support group. They really got it because they'd all been there or were there. You might find something like that helpful.

HB

Pam BH

MichiganPat, I know your story well, as many others here do, because I'm there too. I'm a "fixer" who wants to fix all my husband's and children's problems, but this is one problem I can't fix. As others have said, acceptance of that fact is the key. In effect, I had to "fix" the problem by accepting I can't fix it and focus on what I can do to make our lives better in this situation. I was literally at my wit's end when I found this forum. It showed me the things I was experiencing with my DH were normal in the world of dementia, and the tips and just everyday venting from the different members helped me immensely. Keep coming to this forum. If nothing else, it will inspire you reading the posts from caregiver heroes. 

I don't have a therapist and when would I have the time to do it or how since my DH has anosognosia and it would be impossible to explain to him.  Like your DH, mine varies during each day of being fairly normal to completely delusional. What has saved my mental life, in addition to the wonderful people on this forum, is having someone to talk to which is my daughter and a dear friend who has made the time to come visit with me one day a week. We do it surreptitiously, because of the anosognosia, with my friend coming for a Bible study after which we can talk freely (but softly) when he falls asleep and with my daughter by email and texts in between her visits. They both listen and are able to view things from a detached perspective with my friend able to offer practical advice based on being a retired nurse and native to the area (which I'm not) and my daughter offering wisdom and concern for my welfare.  The other thing that has helped is I finally, three years after diagnosis, have started taking medication for the everyday stress and anxiety, and I'm very glad I did. It didn't solve the problems but it took the edge off so I can deal with them quietly and gently.  Thank you for posting. It has made me do a look back and surprisingly realize how far I've come. I hope and pray you will find what you need to be able to cope with this new lifestyle.  

Marie58

michiganpat wrote:

I have said many times "If I could just accept what is happening I could handle it". Easy to say but so hard to do. This is the hardest and saddest thing I have ever experienced. I need to get it together to be able to care for my husband. Therapy again or even meds. Thank you so much for the responses. 

MIpat, Be gentle on yourself. Acceptance takes time. I agree this is the saddest and hardest thing I ever experienced, too. Looking back, as hard as things are now (DH is late stage 7) I think the beginning was possibly the hardest. It was such a shock, I knew next to nothing about dementia, we were looking forward to retirement, grandkids, and growing old together. The sadness was overwhelming at times, and I think that's normal when we are losing the love of our lives. Sorry it's so hard. But be kind to yourself.

DrinaJGB

I had a therapist for a couple of years but frankly it was rather frustrating at times. She was always looking at her phone and would pick it up if the light was blinking. She even asked me a few times if I minded if she texted her daughter back (grown daughter in college).

  I guess I felt like my money was being wasted in a way. She would always suggest I do things for myself like get a message---the ultimate last thing I want is to be touched by a stranger.I kept thinking what good would that do I just have to go back home again and deal with all of my duties as sole caregiver.

The one thing I can say that has helped me the most is mindful breathing meditation while sitting in nature. It has brought me to that acceptance point--which is a long and hard road for sure.

  It's when you can finally accept the reality that everything is impermanent that you are able to come to acceptance. I now find myself smiling more and even laughing out loud. It is a blessing for sure.

JudyMorrowMaloney

I am not ignoring you. I do the same thing. It seems the only way to cope

Ed1937

Vitruvius wrote:

Please ignore me, everyone else here does. 

I'm wondering if you've been asking questions or asking for help in a thread that was started by someone else, and has had several replies. I doubt that anyone here is intentionally ignoring you. If you have a question, or would just like to have replies to your posts, it's much better to start a new topic. You will get results that way, where you might not if you posted in an ongoing thread. I'm sorry you feel that people were ignoring you.