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Cubpiper: "Panhandlers can be terrific?" I guess I didn't
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Panhandlers can be terrific. It's all in the experience. Jinx, you are the one there that knows best about your situation. Helpful advice is nice but you are the one that knows your husband and I'm sure you will do what is best for him. A few helpful suggestions with the GPS and ID bracelet, maybe the alarm later on also. We can only tell you what has worked for us, and not everything may work in your situation. Keep on keeping on! :)
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Jinx: A lot of elders are negative thinkers. You can't change them. Without saying a discouraging word to him, I would get out your bible and start quoting scripture. It worked to calm my late mom's tears and WAS THE ONLY THING THAT WORKED!
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My father prized autonomy over any other life quality: keeping him a prisoner,for his own safety and my convenience was not an option.He deserved a certain quality of life that I refused to deny him,even though he had dementia.We had 24hr sitters who would walk with him,take him on errands and drives in the car---adaptive strategies which were helped by the fact he was mobility-impaired and couldn't go anywhere unassisted.If he wanted to walk,he always wanted company.Luckily,he was extremely sociable and didn't view accompaniment as impinging on his freedom.Wandering is a definable symptom of Alzheimers---if you can't accompany him,perhaps others will,either as volunteers or as employees.My Dad also had a fenced verandah,where he could sit alone,as he rarely wanted,with his rented apartment.Balancing his need for dignity with my need for his safety was more work and creative strategizing,but it was worth it for both of us---he had dementia,but he still felt like an adult.Take care of yourself,too---you matter.
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It is wonderful that you are allowing him the dignity of choice. It can be a real problem though when he gets lost, disoriented and fearful,which my cause more problems. We have ankle bracelets where I live also. You might call your police department to check it out. My friend is in an assisted living facility. His POA does not allow him the ability to make choices of any kind even if he is capable of making those type decisions. I believe a person should have the right so long as they cannot harm themselves or others . Good luck.
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Here in UK many years ago we had a children's programme about a Scarecrow called "Worzel Gummidge" who came to life. When he visited his Lady Love "Aunt Sally" he would change his clothes and switch heads, sometimes one would get stuck causing no end of problems. I have PTSD and when I was having flashbacks my late husband would say "oh, oh looks like your yesterday head got stuck today." My BIL has dementia which has worsened considerably following a fall, UTI & hospital stay. He's always hated the idea of dementia (calls my Lewy bodies Aspergers) so now when he gets upset about forgetting or realises he's recalled a past event as a recent one we just say "M, your yesterday head got stuck for a while." This calms him down considerably and I've found the nurses telling other patients the same thing with similar calming effect.
Good luck.
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Sometimes he will say things like, "I'm all alone since my father died, I'm no use to anyone. I might as well die." He thinks his father just died, even though it was 40 years ago. Especially when he wakes me up at 5 am to have this conversation, I don't feel all that sympathetic. Part of me wants to tell him that everyone dies, and he should just shut up and be grateful to me for keeping him safe and giving up my life for him. And besides, he won't be dead for years and YEARS, so shut up.

Fortunately, I am not quite stupid or heartless enough to actually say those things.

We have that common type of marriage where he is a pretty good guy, and gave me the chance to have a family. But he did a lot of guy stuff, like wanting to be waited on even when I was also working full time. I know there are marriages where the husband does much more than his share of relationship building, but mine isn't one. He wouldn't listen to me talk, or let me interrupt him to talk, or spend time with me if he had anything else to do. But he was a good father, and we managed to be on "the same team" most of the time.

Now he expects me to be around constantly so he can feel safe. I love him, but I don't LLOOVVEE LOVE LOVE him. I know that telling him I will always be there is useful in calming him. I will try to add "We'll get through this together."

As I think about it, what makes it hard for me to be more compassionate in my thoughts and feelings is that I am afraid of letting myself feel how painful this must be for him. Is there a way to be in touch with that tremendous tragedy without drowning in it?
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Jinx: "What's wrong with giving money to panhandlers?" Yes, I've done it and they want "more, more, more, more......."
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Thanks for all your helpful answers. Even though he is stage 5, he is not "wandering." He is very cautious about crossing streets. Caution is not enough to ensure safe driving, but so far it is enough for safe walking. I am acutely conscious of his abilities and his decline, and will change my policy when his symptoms increase. Unlike many suburban locations, the city where we live is designed for easy and safe walking. He doesn't like to be out after dark, which is good. Those of you who advise cau7tion will be right in the (near) future, but so far so good.

You are correct that he needs an ID bracelet and a GPS locator. I'll be getting right on that.

What's wrong with giving money to panhandlers? I feel a bit guilty because I don't do it more often!
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At this stage, it's not safe for him to be wandering the streets by himself. Good grief! Anything could happen-he could be taken advantage of, maybe he would "think" it's okay to give money to panhandlers (who seem to be the norm around here), et al.
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When my Mom moved through this stage is was hard. You balance between wanting them to have a life in which they decide what to do and also between keeping them safe. It is hard to see as it means decline from the few remaining things that the person loves and is able to still do. The GPS also worked for us. Mom could be a wanderer. No matter where she was I could find her as could the police. She wasn't that way at first, but as time went by we noticed it more and more. Sleep patterns disrupted, a need to prove she was still in control of her life, etc. I was overly cautious concerning Mom, but still managed to lose her in a parking lot. I was horrified. That was when we decided we needed a bit more help than just ourselves to keep her safe. The GPS helped, was discreet, and helped me so I didn't lose my sanity. Also we put an alarm on our outside doors and her bedroom door. They were always set to "chime" except during bedtime when the outside doors were set to alarm. They were battery operated and inexpensive, and purchased at Wal-mart. They let us know that she wasn't sleeping like we thought. They saved us many times. As my Mom started realizing that it was becoming impossible for her to be alone or do many of the things that she would normally do, she became concerned and depressed. I would help get her dressed and ready to go regardless and tell her "we got this Mom" and would accompany her. I'm sure it wasn't exactly how she would have liked it at first but after a few times it just became the norm. I would accompany her to her friends, the hairdresser, the salon, and once she was in that persons care I would leave and enjoy the hour or so that I had while giving her privacy to visit. That person would call me when they were done and I would return to bring her home. She would excitedly tell me about her day, and that would make me smile. As I said the transition was a bit awkward at first, but after a time or two it just became the norm. I agree with the person who said to try and live in the moment. As the disease progresses you will find that piece of advise will make the difference. Your husband will forget your shortcomings on this journey you both are on. Seeing him smile and being happy in the moment will mean so much more as time moves on. Remember most of this is a guess, and it takes practice to find what works best in your situation. It will come, I promise.
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My family did not use dementia or AD with my mother. When my dad died, she had to go into assisted living and did not question it. She tried to wander, so we hired a companion to be with her all day, to take her for walks. She carried an empty purse, but it had my brothers business card in it. She figured out how to get out the locked gate and got lost 3 times. It was so scary, we moved her to a higher security facility. We were all working full time, supporting families. It was the saddest experience, losing her bit by bit. She is gone now. I personally have a living will that calls for caretakers in my home. This is a scary time as I am 69, watching for the signs of AD in myself.
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When my foster dad was still at home, I'm not sure whether or not he recognized having dementia but he sure was in denial when I tried telling him about it. There wasn't much I personally could do but to stand by and let things unfold. As he grew progressively worse, there came a point I could start reaching out to try to find the right help. At some point I found the APS in my area, and he was later put into a nursing home. Sometimes you may run into a situation where there's really nothing you can do and all you can do is wait it out like I had to. When you lack the right help, sometimes there are just those kinds of situations where there's just nothing you can do because your hands are tied like mine were
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Jinx4740, this is just to say my heart goes out to you. I think there are very few "right" answers that fit all situations. We each do our best with what we know, what we believe, and often factoring in experiences others tell us about.

I think that I was extremely fortunate that my husband knew his diagnosis from the very beginning, and we could talk openly about it. That didn't mean that he wasn't in denial about what he could and couldn't do, especially in the early days. It didn't mean he accepted his condition gracefully. But we could talk openly about the challenges and that helped us both.

But I know that is a highly individual decision. We do not talk openly about her dementia to my mother. Different strokes for different folks. I'm not trying to suggest what you should do, but just empathize with how very difficult this aspect of caring for someone with dementia is. Hugs to you!

Lewy Body Dementia (which my husband had for about 10 years) does not typically include wandering. He did have a mobility scooter and ran errands in the neighborhood for several years. That was a great boost to his happiness and quality of life. This posed risks, of course, but they were mainly risks to himself and not to the general public.

A couple of practical things we did about his neighborhood outings: He wore an identity bracelet. (Check out Road ID) I wore one, too, if I left the house without my purse. I still do. So it was easy to convince Hubby that this was a normal and sensible precaution. I also made sure he had a cell phone in his pocket, fully charged and turned on. Since he hadn't used a cell phone before the dementia using it wasn't second nature to him and we had a short practice session before he left the house each time. He found this reassuring rather than demeaning -- but then, he was very aware of his limitations.

My husband's wonderful, wonderful geriatrician talked to him openly about his dementia. (She didn't use the word dementia in talking to my mother.) He was a subject in a research program at Mayo Clinic, and of course the disease was talked about in every visit. As I say, I feel very fortunate to have had that openness, and my heart goes out to you as you struggle with your husband's denial.

I would be interested in hearing how the geriatrician visit goes. Keep us informed, Jinx -- we care!
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I'm not sure how an ID tracker works if the person wanders into traffic and is injured, exhibits odd behavior in a store and is arrested, frightens someone who hurts him or becomes hysterical from fear and confusion. There are so many risks of allowing the person to leave home alone. It's incredibly risky, IMO. I would certainly discuss it with his doctor.
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It's been my experience as a nurse experienced in the care of those diagnosed with Alzheimer's and Dementia that doctors are quite well versed in dealing with patients who are either in denial or masking (aware of the symptoms and working hard to disguise them.) I strongly recommend that you be present with your husband during the appointment. Many folks with cognitive issues will gloss over their deficiencies if given an opportunity, painting a rosier picture than is accurate. It's important that the doctor hear where the problems lie. The identification band and GPS tracker sound like excellent suggestions!
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First of all, he should not be allowed outside by himself. NO EXCUSES!!! He could wander into traffic, and as the last days events have proven, there is NO place in the world that is "safe". By allowing him to take walks by himself, and you know about his dementia, you can be held responsible for anything untoward that might happen to him. Do not care about his denial. He has dementia and that is what it is. It is a terminal, incurable disease that will NOT get any better. Seems like you are the one in denial...
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Where I live the police department has ankle bracelets that can be used free of charge. The patient can't remove them. The police can track them. Some of the alert buttons now can be used further away from home.
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The first thing that stands out to me is that he wanders into a neighboring town and doesn't know where he is. I would be very concerned and not allow him to leave the house alone at any time. He could be injured, be approached by a stranger or become disoriented to the point of it being dangerous.

After consulting with his doctor, I would explain that he has memory problems and the doctor will try to help as best as he can. I would say that you will get through this together and there is no need to worry. Just give comfort and loving promises. To me, it's what is in the moment that matters, because later, he will not recall any of what you have told him.

We called my cousin's condition a memory problem, which is true. The Neurologist used the word dementia, but we didn't dwell on it. My cousin said she didn't want to lose memories of her parents. I told her that she never would, so not to worry. (I wasn't sure, but wanted to comfort her.) Eventually, she didn't realize there was a memory problem. It's been over 2 years and she still seems to recall her parents, which may or may not last. She has no idea that she has dementia.

If your husband seems to be getting anxious, I would discuss meds with his doctor. That has helped.
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Something to consider….

Alzheimer’s is now sometimes referred to as diabetes of the brain. Chances are, your husband eats a high carbohydrate (sugars and starches) diet. Even “good” carbs are eventually broken down by the body into sugar. You might notice an improvement in your husband if you can help him lower his carbs and up his healthy fats. Consider researching the low-carbohydrate, high-fat (LCHF) diet. There’s a lot of good information out there on YouTube. Sometimes people notice an improvement in their brain function with the LCHF diet.

The best to you both.
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First, give yourself a big pat on the back for making the appointment with the geriatrician. Good for you! go to the best source for solutions.

Second, keep writing in to us and tell us how it is going. This is the source of empathy and experience. all of the suggestions above are awesome!

So, hugs to you!
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One suggestion i have is a Freedom GPS locator watch. It is a watch that tracks movement and sends signal to your phone. This way you can locate him no matter where he goes and if and when the time comes when he does not answer his phone or remember to call you when he is lost. The alzstore has them and there are other models to chose from. As long as you feel he is safe allow him his freedom. Try and read his signals, when he wants to deny whats happening let him and when he wants to talk about it support him. This is such a difficult time for you both and my heart goes out to you. Another thing to think about is a living will. If hubby does not already have one now is the time to do it, before he can no longer make those end of life decisions for himself. Having a living will puts him in control right down to the end and takes the burden off your shoulders. Please remember to take care of yourself through this, that is so important. Hugs to both of you.
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See if you can get an identity bracelet that he would wear, just in case. Also, check if your local law enforcement has a program for people with dementia or those with cognitive disability. We have such a program called "Take Me Home" that identifies people to the sheriff's office. This can be helpful if your loved one gets agitated and people around him become frightened and think he's a threat. If they call the police, the police can check the listing, understand what's going on, and react appropriately. It could avert disaster.
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I had a similar situation with my husband and we lived in New York City. One day each week or two, he would take the train to New Jersey to visit his best friend. I worried, but he had his cell phone as your husband does. But he forgot to turn it on. When he didn't return, I called the friend who had put him on the train. He did find his way home much later, in the dark, but then he decided he would not visit his friend by himself any longer. Maybe your husband needs to come to these decisions by himself also. All you can say to him is that his memory problems are now interfering with his safety and ask him how you can help him. I didn't ask, I told and nagged and my husband resented his illness which he never acknowledged and blamed me. This time during the progress of this dread disease where the person is aware of his decline is terrible for both spouses. You can't wait for it to end, but when it does and he is unaware, of course it becomes much harder to deal with emotionally for the caregiver.
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Instead of telling you husband about is declining memories ask him questions about how he is experiencing life. How did it go when you were are the grocery store? How was your time with Susan? When he opens up reflect back what he says, with empathy. So when you where at the store it sounds like you could have used assistance and you forgot what you where there to buy. Tell me about that more? The doctors appointment will help too they will ask questions that move him through the process naturally.
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I agree that your husband has the right to walk if he'd like to. As a precaution maybe you could tuck an information card into his wallet with your name, address, and phone number and the fact that he has Alzheimer's.

Remind your husband of all the things he can still do. Try to boost his confidence.
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My Dad will get annoyed if he can't remember something... so I tell him how my boss and I would sit and stare at each other because we can't remember a name of something.... it was a game on who would remember first. He and I are both senior citizens.

The other day Dad had issues remembering a certain telephone number... I told him not to worry because I could rarely remember telephone numbers once telephone numbers become 10 digits..... compared to decades ago when they were 7 numbers and usually the first two number were letters such as HOward 3-5555.
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