Hi All. After my mother got out of the hospital, two days later her feet were swollen twice their normal size. I brought her to the doctor immediately and he did a blood workup to check for congestive heart failure. All the tests came back clear - no heart problems. It is now weeks later and her feet are still huge. I really don't know what else to do at this point. The memory care unit keeps her feet elevated at all possible times. She doesn't add salt to any of her food. Is there some kind of specialist that I should take her to see? Any suggestions would be greatly appreciated. At times I feel like this board is more helpful to me than some doctors! Nothing like information based on experience.
The following user gives a hug of support to dragging: ninamarc (10-27-2012)
If you find the answer to that question please let me know. Mom's ankles/feet stayed swollen for about 3 years. At times they were HUGE. Other times it was minor swelling. At time her hands also swelled. I have taken her to several doctors, a number of nurses checked her, she had blood work done, they elevated her legs, and they were just swollen... until one day that swelling went away. Every doctor I talked to said it was not an uncommon problem and usu***y not a reason for concern.
If you sit too long, as on a long airplane ride, your ankles swell. If you walk too much or stand in the same position too long, the same thing happens. My best is this is the problem if she has been checked out by her physician and no other problems were found.
If there is liver or kidney problems, that can lead to swollen ankles. High blood pressure can also cause ankle swelling. But you have checked that out and I found no connection with Mom.... she had none of these problems! The only one that might connect is her constant wandering. It was like the ankles had a mind of their own. As I said it just disappeared one day and has not been a problem since.
If you have had her checked for physical problems... unless it become hot to the touch and red (indicating cellular infection) just keep changing positions and elevating the legs from time to time. Lymphadema is result of the lympth system not functioning properly and withdrawing fluids from the cells. If this is the problem and it causes an infection you will know because the area with turn red, be hot, and may even weep fluid. For this you do need to take her back to the doctor. It could also be a blood circulation problem in the legs where the blood is not adequately pumped back to the heart. Again this is a problem only if the area become hot, red,or develops open sores. Again, you would have to take her back to the doctor. Otherwise, it is probably nothing to worry about. Maybe, as Mom's did, one day it will just go away~
I am no expert, but I haven't read anywhere of dementia being causative for swollen legs. My best informal guess is that swollen legs are elicited by some sort of cardiovascular insufficiency (e.g. not able to efficiently return the blood from the lower appendages), and/or electrolyte imbalance or renal issues that could be hormonal in origin leading to excessive liquid retention. And this is compounded by being too sedentary. As Deb mentioned, even healthy individuals have swollen legs if made to sit in an airplane for too long, but this goes away as soon as the individual can walk around a bit to facilitate return of blood from the lower extremities.
Before this incident, did your mother complained of poor circulation in her legs?
No previous poor circulation. Her Recollections unit keeps her moving *** the time so, being sedentary isn't a problem. Hopefully, as Deb said, it will eventu***y just go away. I hope so because shoes don't fit on her feet. She just wears socks or slippers if they fit.
Dragging, that is when we converted to the slippers instead of hard shoes. There is a new slipper that has adjustable Velcro flaps over the top of the foot. Several of the other residents with this same problem have use this slipper successfully. If Mom has been checked out... just see how it goes
I have no idea about this issue on the legs. Sometimes the doctor asks the patient to wear this thin long white socks up to the knee for diabetes or circulation problems. I don't know how this sock helps (looks tight to me?)
Maybe your Mom can wear something like this. It is sold in the pharmacy or health store.
The nursing home staff can wash it everyday and put it on her.
The white hose (can be beige) are called TED Hose or Compression stocking. They are useful if there are vein problems in the legs. The compression makes it easier for the blood to flow and improves the circulation. The doctor would need to prescribe the TED hose. Yes, they are difficult to get on, need to be washed daily, can be uncomfortable, and should only be used if circulation is the problem
The Following User Says Thank You to Gabriel For This Useful Post: ninamarc (10-27-2012)
Something new every day Today her feet are not swollen, however, there is a new problem. It seems that my mother gets up during the night and wanders into other residents rooms and goes to sleep in bed with them. Other times she wanders into their rooms and eats entire boxes of chocolates. I don't know what to do. I inquired at the memory care unit and it seems there is only one person on the floor at night. I told them that they need to keep a closer eye on the few that are up through the night, like my mother. I called the doctor and asked him to prescribe a sleeping pill, which I will pick up on Monday. Tonight I took her out to dinner. She seemed so out of sorts. She didn't look good and when I brought her back around 6:00 (I don't know if it is the sundowners) but all she kept saying was "I don't know where I am". One week she seems like she is doing well, the next she seems like she is dying. I can't take this up and down. It is wearing me out emotionally. I hate this disease.
I am glad her legs are OK. I am sorry that she goes to other rooms. Does this memory unit have caregivers walking around the ward every 2 hours overnight? They should be able to check on her to see if she is in her own room.
Going to other rooms is common for a demented person. In the day in the NH, often they walk into another room and need people to tell them to leave or they will leave themselves. Sometimes they think it is their bed and etc. The NH called it "shopping" but it is normal and nothing can be done about it unless you really stop her from walking around in the day. Usually the NH allows them to walk around like that in the day but at night, they make sure the patients are in bed. Sleeping pills may help so she will stay in her bed at night.
It is like a rollercoaster... Yes Mom will act like on and off and it is up and down emotionally. You need not to take it personally. I agree it is hardwork to deal with it.
It is true that she would say she doesn't know where she is. She forgets where she is and if you take her out, she would ask that question. In the long run, when she gets used to the NH, she is better to stay there. That is why when the person is in severe stage, she may not go out anymore.
It will be up and down.You need to prepare yourself and don't get too personal about it . It is the disease.
Dragging... Everything you mentioned it typical. First I am glad your Mom is up walking around. That is a good thing!!... and something to be thankful for.
As for night wandering, it is not unusual for dementia patients to confuse night and day. They may sleep all day and stay up all night. They may stay up most of the night, nap, stay up most of the day, and nap again. They seem to need much less sleep than we do! There was a time that my Mom walked 24/7 except for short naps in a chair. Even if they put her to bed repeatedly, she would just get back up and be on her way. One care manager told me she stopped by the bathroom to tidy up, and Mom beat her back out in the hall!
Yes, they do wander into other rooms. They may eat what they find, take trinkets, get into bed, sit down and watch TV, or otherwise use the room as their own. They lose the sense of ownership that we have. If they need it, want it, need it, or can reach it... then it is their to be had. It is just what they do. Telling them to stop is useless. The staff should be responsible for keeping up with them if they are awake at night. Otherwise they can not fault the resident for normal demented behavior.
As for tonight, it could be a combination of several things causing her to be "out of sorts". It could be sundowning as you mentioned. The late hours of the day are usually the worse for those with dementia. Perhaps it would be better to try lunch out rather than dinner. That way you are using her best time to have a good time instead of her worst time. The other factor in play may be her night time wandering. If she was up much of the night and then during the day as well, she was exhausted by dinner time. Cognition is always worse when tired. That can make them seem out of sorts. The last factor is her inability to adjust to new surroundings and deal with crowds and noises. A dinner out to us is a nice idea. To a dementia patient it is an onslaught of strange sights and sounds that can be overwhelming and confusing. When you take them out of their normal routine and familiar surroundings they become lost. Their response to this overwhelming confusion can result in them being out of sorts. If she was tired for all the wandering, overwhelmed by the strange surroundings, noise, and confusion, while she was sundowning... I bet she was out of sorts It helps if we can put ourselves in their situation and think like they do in order to understand their behavior.
I used to take Mom out and sometimes she acted the way you described... out of sorts. I stopped taking her for dinner and instead we went to lunch to avoid the sundowning. I also tried to take into account how tired she was. She was usually more refreshed at lunch time than at supper time. If she seemed tired, I just waited to go another day. Eventually the crowds and noises would get to her even at lunch time.... especially in a new place. So I chose a quiet restaurant that had a small lunch business and went to the same one every time. We sat in the same seats and she ate the same thing. Then that became too much for her. Now I just go to the facility and eat lunch with her You have to adjust activities to fit her abilities and inabilities.
Yes, this disease is an up and down roller coaster. She will be able to do one thing today and not tomorrow. She will exhibit a new behavior today and lose the ability to do something else tomorrow. It is just the way this disease is. There is no steady normal but something different every time you think you have it all under control. It is best to just go with the flow and let her determine what you do next.
There is nothing wrong with her being up at night if she is safe and getting enough rest at other times. If she is not getting enough rest or there is a need for her to be in bed at night you might want to try melatonin. Sleeping pills may or may not work for those with dementia. They also can cause drowsiness which may lead to falls and more confusion. Melatonin is not a sleeping pill but when given at the same time each night will readjust her circadian rhythm. This is our bodies knowledge of when it is night and day.. and when to sleep. It will not put her to sleep the first night but in a week or so it should make her drowsy at the right time. I did this for Mom and it helped tremendously. The staff would give her the Melatonin, wait about 30 minutes, and put her to bed. If she got up they would put her back to bed or try to get her settled in the living room where she would eventually fall asleep. By working with her over a period of a couple of weeks, she started going to bed with no difficulties... and sleeping through the night. It is worth trying
Just try not to expect her to be "normal". She has brain damage and is going to exhibit demented behavior. When you know what to expect it is easier to find the moments of joy with her that you want. By adjusting your expectations, you can find alternatives that work for both of you. Don't waste time on the negative but embrace the positive....
This sure is a disease that goes up and down. Just as I mentally accept the way mom is, she goes into a different phase. Although having her here in California is much better than her 3000 miles away, having her here is hard too. Taking her to my house yesterday for Thanksgiving was far too difficult and I will not be taking her out from her place any more. She now has toileting issues. Although I have her in Depends, at the home she has number 2 issues and then takes them off and it gets all over the carpet. It seems as though the home is shampooing her carpet every other day and having to do her sheets nearly every day. When she was at my house she said she needed to use the toilet twice. Getting her to the bathroom takes like 10 minutes, getting her up from the couch takes like 10 minutes with her saying "ouch, ouch" everytime you try to help her up. Then she stood in front of the toilet while we tried to hold her arms to help her sit. She wouldn't sit (perhaps fear of falling) and kept yelling "wait, wait", meanwhile she started to urinate. At the home, they tell me she isn't sleeping at all. Practically up the entire night. She is on Ativan but, obviously, that is not helping one bit. All of this decline has happened in the last 3 months. Five minutes after eating dinner, she doesn't remember that she ate. I hate this disease.
I am so sorry that Mom has toileting issue. She cannot sit down right away on the toielt because she probably has the perception issue: she may not know the distance between her and the toilet. So she hesitated to sit down. I am not sure why she could not get up: does she have some pain issue? Some demented people cannot get up because they cannot move or be mobile in later stage.
It is possible that you cannot take her out due to the difficulty. I think she is at the time of being incontinent. Sometimes the caregiver can set a time to get her to the toilet regularly so she gets used to it. Did you discuss with the home about this? Maybe a meeting for care plan can help you and your Mom. Sometimes they can discuss with you about what to do. I think this is the beginning. If she gets used to people helping her for toileting, she may get stable for a while. Probably she just declined a little bit in the last 3 months.
Dragging, I am with you in hating this disease but it is what we were given to deal with... and we do. I perhaps should have forewarned you about taking Mom home for the holidays. It sounds like so a wonderful thing. The reality is very different. When you take the loved one out of their environment, they become even more unsettled and confused. I remember that last horrible Christmas day with Mom. She spent much of the day complaining or crying. She had no idea what was going on or why.
No matter where your loved one is, it is difficult. If they are far away then you are not close enough to do what you think you need to do. If they are close there is way too much to do. If you are far away you don't see the day to day confusion and decline. If you are close by you see too much of it. There is no safe distance from this disease.
Toileting issues do become a major issue. I do have horror stories with Mom and Dad. They lose the ability to understand how to handle these situations and make a huge mess! One of my most interesting moment was in a doctor's office bathroom. Mom had a large BM accident and I had no wipes. I ask the nurse for wipes and she brought me those little 1x1 alcohol wipes! Now what was I supposed to do with those!?!?! Sometimes you just have to laugh and be creative. Facilities are prepared to deal with these accident. They have the supplies handy and the carpet extractor right around the corner. I see multiple accidents daily in Mom's facility. some are minor and some are MAJOR! The staff just cleans it up and keeps going.
You are probably right that Mom's resistance to sitting was due to her fear of falling. Toilets have no arms to help guide them down. Many times the toilet is white set against a white floor and even white walls. Your Mom's ability to distinguish color has probably diminished along with her ability to distinguish depth. So it is very hard for her to tell where the toilet seat is. Beyond that her peripheral vision has narrowed. It is a strange room and people are trying to push her down into a place she can not perceive. You would say wait also
My Mom did the 24/7 pacing. she was up night and day. If she ever sat down she would sleep for a few minutes and then be up and walking. She wore out more pairs of shoes during that period of time!! She was not upset or anxious. She was on a wonderful cocktail of psych meds that made her very content, she just happily wandered constantly. That is when I tried the Melatonin and it did work for her. It created a circadian rhythm that allowed her to sleep. This pacing 24/7 is a common problem with some dementia patients. Just know it is a phase. They will pass through it to yet another phase.
I worried when Mom talked incessantly asking the same questions over and over. I missed that when she could no longer verbally communicate. I worried when Mom walked incessantly day and night. I miss it now that she is confined to a wheel chair. Her repeated phone calls drove me nuts until she could no longer dial the phone or understand how to talk on the phone and now I miss that as well. Her accusation and demands were maddening. Now I even miss those : It is best to slow down and enjoy the moment for they change too quickly. What grates on your nerves today may just be the memories you hold onto tomorrow.
As for adjusting to a new phase... they don't last long. Flexibility and expecting the unexpected is your best bet.
Thanks for the input. Though most of the time I feel so alone in this journey, whenever I reach out to everyone on this board I wind up feeling comforted and a part of a "family" that I have inherited. I thank you all for your advice/comfort/friendship.