Couples counseling during memory loss

Jami Boyle

Has anyone out there gone to couples counseling in the early stages of your loved one’s mental decline? I have a counselor myself but my DH and I hope and trust a counselor knowledgeable about memory issues and how it affects a marital relationship would help us navigate emotional communications. Of course, this can happen only asap. We just made an appointment at our local pastoral counseling service, whom we’ve used for other marital issues over the years. My DH is fully on board. Anyone with this kind of experience? Yesterday, at my DH’s PCP appointment where he’s being treated for Lyme disease (my first time attending) my DH could not say who the President is. I had all I could do to not fall apart. Thanks for your feedback

SDianeL

This is the right place for help & support. Glad you're here but sorry for the reason. Dementia/ALZ is a terrifying & heartbreaking disease. My DH was diagnosed 2 years ago. Looking back, no marriage counselor could have help us. I thought he was just being stubborn. As someone posted on this forum, you can't reason with a person whose "reasoner" is broken. I would continue your own counseling as you may need it. Maybe look for a memory loss support group. There is a resource on this website. Someone with memory loss loses their logic & are no longer rational. They may not admit they have memory loss. They may become agitated & angry because they lose control. My husband gets care at the VA. The Neurologist was no help except for diagnosis. Neuro Psychologist did the initial 3 hour test and immediately told me he could no longer drive. They found he had visuospatial difficulties. I was shocked. He finally agreed and stopped driving 13 months ago. We recently were referred to a Geriatric Psychiatrist and it's where you may find the most help, and if-when necessary, that will be in the form of medications. Get with an elder care attorney immediately for a DPOA. My brother in law advised me to do it quickly and I'm so glad I took his advice. Within a few months, my DH could no longer read & understand what he was signing and could no longer sign his name. Learn everything you can about this terrible disease. Get the book "The 36 Hour Day" it helped me so much. Keep a consistent routine. I bought my husband a digital clock that shows the day, date & time. He had to stop wearing his analog watch and I bought him a digital one. He refused to take a shower. The book helped me understand why and tips to how to get him to shower. Someone posted this and it explains a lot & what to watch for in the stages: https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf

Quilting brings calm

when my mom was deep into her anxiety and depression along with mild cognitive decline, I asked about counseling. I was told that it wouldn’t help because she would forget the discussion. As soon as she left the appointments. She sees a psych resident every few weeks to get her anxiety and depression medication. So she has ample opportunity to voice all her disappointment about her life and my step-dad. Which she does to anyone that will listen.

M1

Jami, my partner and I had used a couples counsellor in the past whom we really loved. We saw her the first time, on recommendation from a friend, after what turned out in retrospect to be the very first bad episode caused by my partner's dementia--but i didn't realize it at the time (it was a trip to Florida that got completely derailed by her claustrophobia, wouldn't get on the plane. The dementia tip-off was that because she was so upset, she couldn't work the shower in the hotel. This from a woman who was a contractor and had installed unfamiliar plumbing for a living....). We saw this counsellor off and on for quite a while--but not for things related to dementia. Once I was really sure of the diagnosis, we didn't go any more because my partner did not have insight and couldn't change her behavior.

Ed1937

Just to add what has been said, it has often been said here that we are the ones who have to change because a PWD cannot do that. We are the ones with a mostly fully functioning brain. Even if he attended counseling very early in this disease, it likely won't be long before he doesn't remember what was said to make your relationship better. Please don't expect anything from him, but try to remember why he probably will not uphold his end of the "bargain" from counseling. This is a hard part of the disease - realizing that anything that will make it easier will have to come from you, not him. I'm sorry.

harshedbuzz

@Jami Boyle

With all due respect, that cruise has sailed for you.

There seems to be a theme in your posts in which you attempt to interact with your husband in a manner that suggests you are struggling to meet him where he is. My mom struggled mightily with this, too. Dad was very intelligent and had a lot of cognitive reserve and his language skills remained extraordinary, so it was really hard for her to embrace her new reality. Sometimes she defended her behavior, which largely served to ramp up his worst behavior, as treating him with respect.

Your husband hasn't just had a mental decline. His short-term memory is shot. If he were to attend counseling with you, would he recall his "homework" later if he can't name our current president? He has already lost the ability to feel empathy for you and the impact his disease is having on your relationship as evidenced by your other thread. Also, he's likely lost the executive function needed to appreciate the cause and effect of his actions and to recognize when he needs to implement a different strategy or reframe his thinking.

When dad was initially diagnosed, we looked into an inpatient rehab for alcohol use as it was critical he stopped drinking. I searched for a place that would consider a senior and someone with memory issues and found exactly one in the Delaware Valley and they told me up front that they didn't expect to be successful. The one time mom and dad got into a disagreement fairly early on at a memory clinic appointment, we were turfed to counseling MSW and it was an utter waste of time.

HB

Iris L.

Please get an understanding of anosognosia. Your DH is unaware that he has a debilitating, terminal brain disease. Most family members come to realize that with the anosognosia, their LOs are unaware of the truth about their condition. They don't want their LOs to become aware.

Iris

jfkoc

I too think the ship may have sailed but I would give it a shot always keeping in mind the illness and how it may distort your husband's participation.

Jami Boyle

Helpful and disturbing comments. Thank you all. We will go ahead with this counseling as my DH is also looking forward to this, probably hoping I’ll settle down my emotions. I hear you. Alas

Ed1937

Jami, I hope he proves us all wrong. It's good to be wrong when something good comes from it. I'm pulling for both of you.

Iris L.

I feel like I need to add this input as a person with memory loss but not Alzheimer'sDisease. I recently began attending bird-watching sessions with a group. We look at many birds and listen to their chirps and calls. The birders identify the birds by their feathers, their heads, their wings, their bodies, their tails and their colors. They can tell male versus female birds. I can do none of this, I can identify only the birds that I already knew. I am not learning much, despite the excellent teaching from the two professional naturalists and the other experienced birders, because I just cannot remember much. But that's okay for me. I am there to enjoy the other people, the beautiful foliage, and learning about the birds and the other creatures that we come upon. In other words, I can enjoy myself without having to remember much about it.

I say all of this to say that the LO of the OP may indeed be looking forward to attending counseling, and may even be hoping to get something constructive from it. But I have doubts that anything will be remembered, if he truly has a dementia. He may agree and be receptive in the counselor's office, but may be different on returning home. On the other hand, he may have some sort of delirium or cognitive impairment that is related to his Lyme Disease. Only time will tell.

Iris

Jami Boyle

Thank you all. I’ll keep you posted appreciate your rally and also your hard won wisdom. I am meditating with a guided meditation on surrender. It’s helping. Jami

Howaboutnow

Every new “oh no, he did what?” moment…like forgetting President, trying to put socks on his head, dipping a PBJ into salsa, eating cat food, not being able to find a bathroom in our own home, telling the man in the mirror “Go Get out of here!”, bowel accidents..all those “progressions” feel shocking in the beginning…but increasingly less so the further down dementia road we go. “Oh, that’s new” is replacing the panic and “oh sh!$” when a new behavior happens. That change may happen within you too. Maybe it’s a result of wearing us down or maybe it’s full acceptance of the reality. Either way, it’s probably helpful 🙃

Regarding the potential for a mutual benefit from joint counseling. For us, NO. It did not work. Lack of: short term memory, insight, clear understanding of diagnosis and its prognosis, this list goes on—-and it all meant, no fault of his, nothing lasting could be gleaned from joint counseling. Individual counseling for yourself, yes. That will benefit you, and as a result, indirectly benefit your DH.

Jami Boyle

Oh boy… I’m reading and listening. I don’t like it

Today, as I rode this electric bike we will purchase from our neighbor, I realized…What? So many things. At this point it seems mostly about me though ironically it’s all about him. Wow.

it feels helpful that you are listening to me. Like Iris complaining about no chat groups, there is something missing for early birds. When I get on my computer again perhaps I’ll articulate better. Good night kindred. Jami

storycrafter

Early, very early, in my dh's process with FTD, he received some different therapies like relaxation techniques and anger management tips, and counseling. It was helpful at the time in that he'd come home afterward and seem more relaxed and comfortable for about three days. It was a reprieve for me each time he saw the counselor. Even though it was only two or three days benefit it seemed worth it and calmed him for that time. My husband was/is aware of of his decline, at least somewhat, and it seemed to help him to have an objective third party to talk with for awhile.

Since then I've gotten myself a grief-dementia counselor and she believes it wouldn't be helpful for him to have counseling for the reasons mentioned above in others' posts (he hasn't had counseling for a long time now). Sometimes I wonder if it wouldn't at least provide him an outlet of some kind that could be beneficial.

trottingalong

This group taught me to meet my DH Where he is at the moment. To recognize that he believes what his brain is telling him. His truth may not be mine, but when I did follow what others suggested, my life was made easier. His short term memory has changed recently. I go with the flow. His brother called and he laughed and had a good visit. The next day he was wondering when his brother would call. I told him he spoke with him the day before and I told him they both laughed and he had fun talking to him. That made him happy. My DH is aware his memory is fading,

Iris L.

https://alzconnected.org/discussion/comment/181432#Comment_181432

Storycrafter wrote about relaxation techniques and an outlet that could be beneficial to the PWD. This is what we patients used to post about years ago when I first joined. Things are changing for us, and we need to know how to adapt or respond with the changes. I think it is important to focus on the goals. Short term goal of relaxation and relief of stress and anxiety is important, I always encourage this. Alan in Colorado, one of our emeritus members who was himself a psychologist, used to warn us that stress and anxiety will reduce our cognition by HALF! This was good for those of us who posted on the boards, but the majority of PWDs have anosognosia and are unable to self-soothe. Thus it can be useful for the caregiver to purposefully avoid stressful situations and to learn stress reduction techniques that the PWD can be guided through.

Iris

harshedbuzz

@Jami Boyle said: "So many things. At this point it seems mostly about me though ironically it’s all about him. Wow."

It is. This really struck a chord with me. When we were living with dad's dementia, it made me utterly crazy initially that so many people automatically put dad's needs, wants and mere preferences ahead of what was comfortable, best or even possible for my mother. It was especially irksome when this was done by medical professionals who cared for them both as patients; they shared a PCP, pulmo and retinal specialist when I moved them back to where I live. This was the primary reason I found a psychiatrist and therapist for her-- to give her a place where the focus back on what is best for her to balance out some of the, IMO, unreasonable assumptions made by the others.

That said, successful interaction with a PWD will only come with meeting them where they are. That, too, can be challenging as the landscape is always changing so the approach may need to be different day to day and as the disease progresses. This can be challenging when the person looks the same and still speaks with the same voice. And it can be painful to employ strategies like using work-arounds and fiblets in a marriage based on trust and honesty.

I agree that there's not much out there on early stages. I feel like there's a broader spectrum of presentations earlier in the disease when so much more of the PWD's personality is there. And I feel like a lot of people aren't diagnosed until later in the disease for a lot of reasons. My dad, with mom as his willing accomplice, actively avoided an evaluation until he fell into a psychotic episode. My aunt lived alone 200 miles from her elderly siblings with only occasional short visits. In both cases, as newbies we had to drink from a fire hose to get up to speed.

The tasks of caregiving do shift with progression and depending on the PWD's presentation/personality and the abilities of the caregiver, some phases might feel harder than others. There is no doubt that they physical aspects of late dementia care are more time consuming as one's LO needs hands on for more ADLs. But the mid-stages when dad was with it enough to resent and react to his loss of control and independence was much more difficult emotionally.

HB

storycrafter

Jami, thank you so much for raising this topic. And thank you to everyone for your replies. I find it especially helpful to read these because you give words and expression to the most difficult aspect of this journey for me so far. Being able to now "name it" is so helpful. It's a relief. It's validating, and healing. ~Helen

Jami Boyle

In

Jami Boyle

Hello fellow travelers, it’s been awhile since I wrote. Since then my DH and I have attended our first counseling session, I’ve attended a Spiritual retreat, and I have gotten a personal email (through Alzconnect) from Maureen whom I sent a reply to but have not heard back from. Oh, btw, did I mention that our new computer got hacked and the IRS is breathing down my neck by mistake? OMG. Is there Enough going on in this world?

i really wanted to be able to type on a computer instead of my phone but alas I am still here. I did NOT go to the second caregivers group I had attended one month ago. Looking back on it I realize my DH is not as evolved (or deteriorated) as those in attendance. Alas, different needs for different stages

i have had to calm down and not rush my learning about dementia. It was making e crazy and desperate perhaps this is what denial does for us, serve as a kind of buffer. Have I been in denial about counseling? Perhaps. It wasn’t a good session. My DH could not locate his wallet just before we left (in two cars) and that exasperation as we arrived got pinned on me. All the things you speak of.

But my exhaustion seems to come from jumping ahead and trying to prepare in some way. I’m trying to understand and apply and respond in some healthy way

My counselor counseled me on depression, asking me to speak with my PCP. I have. I havE to take meds to help with my anxiety. And if it wasn’t for the astronomical chaos of our world I might be able to reflect with some sense of calmness.

Just want to connect again to let you know I’m here and still in need of help Jami

Ryansama

Hi Jami, everyone’s PWD is different. I’m lucky (I guess) because 5 years in my husband is still continent, able to dress and feed himself. He can heat up something in the microwave and toast a bagel. He can carry on a conversation. The confabulation is hard to get used to. No matter how little he knows about something he can make up elaborate tales about anything he hears about. He truly believes his stories. He also has these scripts that he recites over and over very passionately, I tune them out mostly… then I feel bad that I’m not paying attention to him. My dear friend’s husband has lewy body dementia. He is mean and nasty and suffers with hallucinations. We commensurate with each other and pray that there will be something left of us when this journey is over. It’s not all that healthy to spend too much time dwelling on stage 7 or anticipating / dreading stage 8. It’s good to be informed get your ducks in a row know about CELAs and UTIs, but the rest you have to make up as you go along. Fibbing is your friend and being “right” might ruin your whole day.

gampiano

Hi Jami,

ive been looking for you, and was glad to see your post as i was scrolling through. My life has taken quite the turn, and ive been caught up in the out of control ravaging monster of this disease. So , if you read my posts, you'll see that i've been scrambling to implement a new plan, while being a sleep deprived zombie.

I will tell you this: Our penchant for problem solving , taking action, managing crises may make us a little cuckoo, but , if we can survive our intensity, in the end, we do accomplish things. We never have control over things for very long, there are no rules in this game. But... there are some resources out there and sometimes it takes awhile to knit the afghan together. [geez where did that analogy come from]Right now i'm sitting here with my agitated husband who is refusing meds, food, beverages for the last three days. Im waiting for some kind of anti anxiety med to come into the pipeline, but of course, now its the weekend, so tonight might be a Rocky Horror . So for me, at this time, it all will come down to one little pill, and how to get it in to DH. I'm going to have to slip it into ice cream, whenever he decides to eat, and hope for the best. It might not be at bed time but what ever. Read my post about Hospice Care, and put that in your tool box for down the road. sending hugs,

Maureen xo