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Husband doesn't recognize me: Struggling to keep him safe
I've been lurking here for quite a while, just reading posts and gathering information. I am literally in tears on a daily basis as his dementia symptoms seem to just progress and multiply every day. He is diabetic with hypertension and Stage 3a CKD. All of these issues were being well managed and under control for the past 8 years.
About 3 years ago, my darling man began getting lost while driving familiar places, misunderstanding words, and occasionally mis-speaking, calling everything a whatchamacallit or people whatshisname. As it began happening more frequently, I spoke to the doctor about it. He denied any difficulties and put it down to being 73 years old. Our PCP said to keep an eye out for changes and report back as necessary. At this point, we were doing 6 months check-up and all was relatively well, including his blood work.
This past April he began having a problem using the TV remote control. Then he started getting dressed and going to church on random days of the week. Doctor advised him to stop driving, but he refuses. Extremely belligerent and verbally aggressive when anyone mentions it, especially the safety of himself and others.
I fo all housekeeping and financial tasks because he can't remember how to use microwave or stove or washing machine or any electronics, including his cellphone at times.
He uses a catheter because he has a hypotonic bladder. Last week he asked me what these things were for. I told him they are for urinating and he asked me to show him how to use it. Yesterday he said he can't remember how to do it, so I do that every 4 hours now.
On Sunday he got up at 4am, packed some shirts and told me that he was leaving and going home. He refused to believe he lives here and that I'm his wife.
He said his wife has been gone 3 days and he's not staying here. I persuaded him to stay and just wait for her to come back, that she may have had an emergency or something happened with her family out of town, but he's really upset that she would just up and leave him.
I've been here with him, all day, every day, but he just thinks I'm some woman taking care of him until she returns.
This not knowing who I was happened previously about a month ago for about a week, then one day he asked me a question using my name, and I said, You know who I am? He said, Of course I do, you're my wife. Why are you asking me that?
So all seemed well until Saturday night when he said Sheila put my socks away and I don't have any clean socks. I just looked at him and got the clean socks. Since then, he keeps asking where she is and when she will be back. All of his other conversations and behaviors are for the most part, our new normal.
I am just at a loss as to what to do that would be most helpful and to cause him the least amount of agitation and distress.
We live alone, but he does have adult children who have been less than helpful in the oadt, and actually cause him to be more agitated and distressed.
We have an appointment with his PCP on Monday, but I'm really struggling here to keep him safely indoors until then.
Any suggestions would be greatly appreciated.
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Am a nurse as well as a gerontologist. It drives me insane when primary care doctors and any other provider has never endured what you are experiencing.
I see it over and over and over again. The doctor/PCP is thinking "Let the spouse handle it". Well, what about the HEALTH of the spouse, doc? It borders on negligence, when providers do not fully analyze a situation such as yours, or refer you to a specialist in degenerative neurology. Another area I see this is in Parkinson's patients.
These providers have RARELY if EVER been in your situation. They pat the spouses hand, listen a bit (if you are lucky) and send you out the door. The elephant is still in the room, unaddressed.
My advice in this sort of situation is: If a loved one is stressing you so much, as well as not recognizing you, and no family has stepped up to help you, you save yourself. Do not worry about what "others" will say because THEY are not living your life with him.
It is definitely time to place them in a care home or a facility: when it is a question of safety, bursts of anger/aggression or the caregiver is losing sleep.
Save yourself because a spouse with advancing dementia is already in a sinking ship and you do NOT want to go down with the ship.
It isn't abandonment: it is looking at reality and you have done your very best and are nearing the end of your rope. It is nothing to be ashamed of or to feel guilty about.
God is the one in control of this situation. Talk to God and let him take over. I wish the best for you, lots of strength on your very difficult path. You will be ok and get through this.
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9 Reactions@slarson14 , you make very good points! The stress and exhaustion of caregiving can be overwhelming for family members. Especially those who don’t have outside help coming in, Most don’t realize that it’s not just memory loss you are dealing with, but incontinence, refusal to bathe, wandering, falling and can’t get up, delusions, sleep disorders….so you may be up all night trying to calm a person who can’t sleep and believes strangers are trying to enter the home. And, repeating the same things over and over.
What surprised me the most was how fast my dad declined towards the end. That’s why I now encourage caregivers to get help in board that you can call if you suddenly need them. It’s incredibly stressful to have a person in a bed who is unable to move…..he wasn’t able to shift, slide or help as I tried to move him in the bed. Stopped eating….crying…..luckily, I sent message to his Primary who approved Hospice and they arrived quickly for eval and got us a hospital bed. I would recommend getting a team of people involved as early as possible. This experience was traumatic for me. Perhaps someday I will view it differently. Oh, I was also caring for my mom who was also in the home, though she didn’t have dementia. Please be reasonable with the load you carry.
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6 Reactions@lulululu My husband, who is in year four since diagnosis, doesn’t always remember the names or the relationship of family or friends, but he does still recognizes faces when he sees them.
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2 Reactions@lulululu
Hi: my husband forgets the name of our newest grandson, however he remembers the names of our grandchildren that were born before his diagnosis.
He is starting to forget the names of more distant family, like nephews, but still remembers immediate family.
I separate his memory into the 'before time' as I call it, and now.
Take care 🫂
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3 Reactions@lulululu
Our Dr had me make a ‘checkup’ appt for my husband. While there, she told him that Medicare usually requests a cognitive (MoCA) test at 65. He was 78 and would he be ok taking one. He agreed. It only takes about 15-20 minutes. It confirmed what I already knew.
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3 ReactionsIt is extremely hurtful when you have done everything and he is waiting for another women. We went through that a lot in the beginning but I think it was because he lived a double life. I just say I am Jeannie your one and only and he now says ok I am glad you are here. He used to get mad but in the mornings he is very lucid so I discuss it gently with him and he says will you show me our wedding photos when I get confused and I now have a frame that goes continually with family and many of he and I together it has helped 80% of the time. Our Dr also gave me Serequal to give when he gets agitated and give half and he calms down.
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5 ReactionsDear @sr5367sh
Such great insights from the group. Here are a few additional thoughts for you.
PCP Deficiencies: I'm sorry that your doctor did you wrong. PCPs are fine for medical items, but I always recommend that people get a gerontologist. They have the insight from dealign with many patients with these issues. They can advise and advocate for balance on quality of life issues. Ours actually asks me at each meeting, what I need.
End of Driving Anger: My husband has been very sweet and compliant for the most part, but the were a good two years of grumpiness around the loss of driving. It wore off eventually. The doc did not blame me but my husband did anyway.
Emotion/behavior modification medications. I tend to be cautious about medication for emotional issues. But now is the time to be open to it. There are very specialized medications ( A friend told me she got a medication that specifically addresses uncontrollable crying!) I did not want to tamp down the highs that I was working so hard to create for my husband by giving him something that would address the lows or anxiety points. We got a low dose anti-anxiety drug that did away with the sadness about his father that returned again and again.
Resistance/Delusions: Regarding the very uncomfortable situation of your husband not thinking you are who you are. I have not faced that exact thing but there are other strong wrong beliefs that pop up. FWIW, I will share a couple of thoughts. One is what I saw at a memory care facility where I had to put my husband briefly. There was a lady, new resident, who arrived there and she was sure from the start that she needed to go home "today". I watched as the staff explained that her female relative was coming at 4. Then that she had called and was running late. Then that she was coming tomorrow. They did this for days and days as often as she asked. She often was by the door with her belongings, waiting. Eventually it faded and she became a resident in her own mind as well. This is to say that what seems ridiculous to assert can, indeed, be asserted and it can ultimately be compelling to the listener, or it can get them through a period of time when they believe something unshakably, but then discard that belief.
The other thought I would share is that my go-to strategy is to fill my husband's time with joyful moments so that his mind does not descend into dark thoughts. The confusion that this disease creates is disquieting at best and terrifying at worst. Your husband's thoughts about you having left may be the loss of facial recognition capabilities that another community member mentioned, but they may also be engendered by the fact that that is undoubtedly his worst fear: As he senses his capabilities decline and sees that you are is one source safety and comfort, he may mentally play out scenarios in which he would losing that. I know, because that is what I did when I was a little girl, painfully aware that my mother was the only person in the world who was my lifeline. My husband was in the hospital recently. One night he turned to me and said these whole sentences "Do your other friends ever tell you to go to another place? Do they ever ask you to do things that you do not want to do?" Understand, he normally cannot complete sentences. And the half that comes out is rarely on topic. Something, a TV program (?), just a thought(?), clearly sparked an undercurrent of fear about me being distanced from him by others.
We can reassure them, but we can't argue when they believe something. We are left with our trusty all-purpose tool, Distraction. Specifically, a stream of moments that are filled with life, love and simple things that tell him that everything is ok.
You are carrying a very difficult load. I cannot leave you without an exhortation to get help if you can afford it. There are caring lovely people out there who need the money and yet do the job for more than the money. They can create additional light in your husband's life and keep you from sinking as you carry the load for all things related to your joint life, do the detailed caregiving that increase in number of tasks first, and then increase in the time they take, and live your life.
All the best.
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