New member,need guidance as caregiver

Carmen M

So thankful for the posts I have read on this site and decided to join.

I am a caregiver for my significant other. We have been together for 36 plus years. He was diagnosed with dementia in 2021 but it seems to have progressed. Some days he is pleasant, nice and cooperation but then there are days he is agitated and verbally aggressive. last week he was verbally aggressive all day and it scared me. Was not sure what to do to calm him down other than to ignore the verbal abuse and treat the day as usual. Any suggestions please. Then on Friday, he started to wander in the neighborhood in the dark. I called 911 and he was transported to emergency. this was the first time the wandering happened so now I am afraid to leave the house. Spoke to VA doctor on Monday and they will prescribe some new dementia meds and meds to calm him. How can I manage the possible wandering in the future? This is really scary. We live in a different state from family so not much help there. We have a few friends to help but I feel guilty to ask for help.

Any advice will be appreciated. Thank you.

M1

Hi Carmen. I also am technically unmarried but care for my partner of 29 years who is now in MC. A first question always is whether you have legal affairs sorted-do you have healthcare and financial power of attorney for him, wills in order, and financial plans regarding how you might finance long-term care? A certified elder law attorney can help with all of these things. And you certainly need to talk to someone at the VA about what he may qualify for-there are a couple of folks here who have gotten catastrophic disability status based on dementia.

Slide locks placed high on the doors are a potential temporary block to the wandering. So sorry you have had to join our ranks but you have come to a good place.

Ed1937

Carmen, welcome to our little family. You found a good place here for support, understanding, and education.

If you have good friends, please let them know that you could use help. If you feel uncomfortable asking for help, just get the idea across to them without actually asking. If they offer, please don't refuse. This is one of the things you should do early on, as it will make things easier if you can get any help at all. Maybe they could make a meal for you, or just sit with your husband for company while you can get a break at the library, or a cup of coffee at a restaurant. If they don't know you need help, you will not get any.

M1 gave you excellent advice, especially about seeing a CELA. The sliding locks he mentioned worked well for us. They need to be placed above eye level because most PWD don't look up very often. There are also door alarms that are excellent, and Amazon has a lot of them. Check reviews before ordering if you decide to do that.

Re: wandering. Most police departments keep information for people who wander. This information can be accessed from any patrol car, and it includes a description of the individual, and often a picture. Call your police department to see if they have something like that. They probably do. This could save a life.

SDianeL

Carmen, I am in the exact position you are in except we're married. My DH was diagnosed in 2021 with ALZ-Posterior Cortical Atrophy. He can no longer be left alone especially at night. That's when they tend to wander but could also during the day. Some action items to help you: 1. Get with an attorney and get a DPOA now. Don't wait. 2. Find a Veteran Service Office in your county and get them to help you file a claim for dementia. That will take awhile. If he is already being treated by the VA, call and ask for his Social Worker. Every veteran is assigned one. Tell them you need help. You may qualify for respite care and/or Caregiver monthly stipend. 3. Read the book "The 36 Hour Day" which helped me so much. 4. order inside locks for your door. There are different types depending on the handle type. I just ordered 6. Put up signs to show him where the bathroom is I am going to put some type of barrier or stop sign to keep him in the hallway to the bathroom. 7. Contact your local sheriff and see if they have trackers for dementia patients. 8. Ask the VA for an alert button. They gave us one but my DH won't wear it. I keep it handy in case something happens to me. The VA has many other devices you may qualify for like shower chair, shower hand held wand, canes, walkers. Caregiver Support (after qualifying) has been a life saver for me. 8. Get a referral to a Geriatric Psychiatrist at the VA who is the one who manages his medications. We just met with my DH's and she just prescribed something for depression. See if you can get access to the online VA portal to manage his prescriptions and communicate with his doctors: https://www.myhealth.va.gov/mhv-portal-web/home Please keep us posted. This disease is heartbreaking & terrifying. Hugs.

Carmen M

Such helpful advice. Thank you. As we all are experiencing, this is so overwhelming and hearing/reading advice from others helps so much.

I have another concern. So my physician and social worker stress how important to have a structured day to include walking. But it is so difficult because each day varies depending on mood, strength of legs to walk. I can't make someone go walking or engage in an activity right? I try my best but sometimes it just doesn't work. So the days are spent watching the old westerns and napping. His hobbies were playing softball and refereeing sports which both cannot do anymore. Any guidance would be so appreciated.

I have only been on this portal for one day and I already feel the care and love. Thank you so much

Joydean

Carmen I was also told the same thing about walking. No way can I get my dh to do that. Sometimes I take him to the store with me (not a very pleasant experience) but I can get him to walk a little bit there. I have tried the chair exercises too, not any luck there either. He also just watches the old westerns! I just try to keep him happy and honestly that’s about all you can do. I have made friends with his social worker and she is invaluable to me.

Joydean

Best of luck to you and your dh!

Ed1937

My wife was not able to walk far, but I went to Goodwill, and found a wheelchair for $20.00, and used it to take her on the bike trail next to the house. It didn't get her exercise, but it did get her out of the house, and she loved it.

Jeff86

Carmen, my DW’s physical therapist wants her up and walking every day. Of course, I do too, but all of us here know the reality. Each day is different, and some days it is not possible to get our LOs motivated and energized enough to do what would be ideal for them. Acceptance of limitations—our own as well as our LOs’—is an important part of our survival as caregivers.

Jo C.

I often remember to share: There is no perfection in all of this. There is only the best one can do under the circumstances with the challenges at hand. And that is a lot.

It is an unpleasant place to find oneself with such agitated behaviors. Many times when this happens it is because our Loved One has a "silent" urinary tract infection. These UTIs are called, "silent" because there are no symptoms of pain, burning or frequency; BUT there will most often be a significant change in behaviors to the negative side of the ledger and it can be quite dramatic until the infection is treated.

There are indeed medications that can also assist with such behaviors. Just think; if they are driving us to distraction, imagine how it is to live inside their head feeling all of that - we need to help them so they too can gain some peace for quality of life; medications can be started low and go slow to assess how things are responding. You can make the healthcare provider aware of the persistent issues and be firm about your Loved One needing medication to better their quality of life.

There are great alarms for notifying when a Loved One approaches a door, or turns a door knob or even pads for the floor that when stepped on give a loud alarm. Amazon has a lot of these and you can assess what is best for your situation. Also those door locks above one's line of vision are good. Here is one that my neighbor used as the sliding lock did not work as her husband was able to slide it; this was found on the Alzheimer's Store but Amazon probably also has it:

https://www.alzstore.com/confounding-door-lock-p/0247.htm?utm_medium=pla&utm_campaign=High%20Priority%20-%20PLA&gad=1&utm_source=google

Our healthcare providers give orders and they mean well; but evidently many of them have not personally hands-on cared for a Loved One (LO) with dementia who is resistant to doing much. Sometimes we can do what is prescribed all of the time or part of the time depending on our LOs; other times it is a solid, "no go," on a permanent basis from the start which our LOs make very clear no matter how we try.

We can try to go for a "walk," but most of the time for some of us, that is not going to happen due to resistance and outright upset refusal. Going to a store and walking in a few aisles may be helpful for some on a day or so, but it is not doable for some and not sustainable for others for what the health providers want to have happening.

So . . . you do what is best for what your LO can and is willing to tolerate. If watching favorite TV programs are their only accepted comfort place, then that is the reality despite our efforts and as said, we do our best. it is about the quality of life. We did a few things casually and not demanding around the house that included having to stretch arms, or walking to the patio and back, etc. A little at a time and it did not seem like exercising demand.

We also need to be able to have peace for our LOs when we can and forcing a person into a bad place for them is not going to give return rewards but only induce frustration and upset which can last for quite some time. Kindness comes in many different forms. My LOs was his chair and Gunsmoke. And an occasional slice of, Marie Callender's Lemon Meringue Pie. He did well and was content for which we were grateful.

Lgb35

I am a blue star mother and I wonder if you have a VFW post near you. They sometimes have walkers etc and they might have some vets who would love to chat with another vet. Not sure about all this but it’s worth checking into

SDianeL

My DH's knees are shot and he has visual difficulties so walking very far is not possible because he's high risk for falling. He uses a cane but refuses to use a walker and definitely won't get in a wheelchair. I can get him to walk to the car and go for a ride. I also get him to do the dishes (we wash them by hand) and he will help me dust. That's about all the exercise he gets. He also watches the old westerns and.... women's wrestling! LOL. His PCP said to be sure to watch his diet because he's a diabetic and his A1C was up. I said he doesn't recognize foods and foods he used to like he no longer will eat. I gave her a list of what he won't eat. We're down to 2 things for breakfast and when I serve his afternoon meal he asks me what it is and sometimes won't eat it. So his doctor stopped asking me about his diet after that visit. We do the best we can under the circumstances.

Iris L.

I have a few suggestions regarding getting PWDs engaged. PWDs lose their initiative. You cannot say, "do you want to (insert activity)?" The answer will always be "No!" You might try to engage cooperation by saying instead, "I need to (insert activity), can you help me?" Often PWDs like to help. But remember that their attention span is brief, so make the activity brief.

PWDs tire easily, so plan rest periods between activities. And consider that a mundane task can be an activity. For example, dressing is an activity, because it involves a lot of motion, bending and twisting. After dressing, take a break and have a cookie! Or something else appropriate for the diabetics. Walking to get the mail is an activity. Folding towels or socks is an activity. There are a lot of activities. Think of failure-free activities. There is a book by that name.

Iris

Carmen M

I am so appreciate of all the comments. I feel like you folks are living in my home as I can relate to everything mentioned regarding the eating, not eating, not exercising, etc. I did order The 36 Hour Day book as recommended.

Now that I think about it, the comment regarding the dressing can be a major activity. Never realized it from my LO prespective. Also, going to the store for a 10 minute walk is a major event for us but I still attempt to do it during the good days.

Yes my LO is also type 2 diabetic and I was feeling guilty about giving him a sliver of cake and his AIC is higher now. But I figure he needs some reward and joy.

So tonite around 8pm which I think is a part of the sundowning, he wanted to go somewhere, could not explain where. So i said lets go in the car and maybe get an ice cream. We drove that direction but when I turned into the ice cream place, my LO became agitated because he wanted to go ????. The doctor prescribe seroqual as needed but I am thinking I might need it every nite if this sundowning keeps happening. Has any others experienced this sundowning effects? What can be done? I might have to medicate every nite around 6pm just to prevent it.

Just can't thank everyone enough for all the helpful feedback.

Marta

Yes. Medicate with Seroquel well before the sun downing starts. Seroquel works best if given daily (or even twice daily if indicated).