I need suggestions about how to help my mom with severe Lymphedema in both legs, incontinence, obesity and mobility problems.
My mom is 68. No cognitive decline except for normal forgetfulness due to aging. She stage 3 lymphedema, weighs a little less than 300 lbs. She has been hospitalized 3 times in the last year, for congestive heart failure symptoms, but what happens is that the fluid builds up in her legs (because insurers & Medicare won’t cover the bandages she needs or compression garments), then the fluid builds up into her abdomen and thorax and makes the lungs and heart work too hard. Welcome congestive heart failure. Elevating her legs, she often does, as it helps some with the swelling, but she has such a hard time getting out of the chair because she has lots of pain in both knees, hips and low back due to severe arthritis. Her knees don’t really have any cartilage left. They are bone to bone. She takes Lasix for high blood pressure and to help regulate some of the swelling - it is a diuretic that lasts 6 hours so she needs to get up often, but she doesn’t. She continues to use OTC pads and has accidents daily. Then she leaves the clothes in the main bathtub making it impossible for others to use it and eventually the clothes get put into bags where the ammonia eats away at her clothes. She moves around very little now and she seems not to understand how important it is for her to use her legs pumps, maybe because after the massage-like process she doesn’t have anything to put on the upper legs to keep the legs from filling up again. She has more and more depression because of her health issues and is always cold (I read on the forums here that one caregiver bought her LO a heated blanket. If my mom isn’t too afraid that it will shock her, I think I might invest in one. Our electric bill is very high now. I am recovering from PTSD, am a one year cancer survivor and am in debt up to my eyeballs because I have had a spotty employment record due to depression, ADHD, anxiety, poor decision making and not enough living skills, work-life skills and coping skills. I’m improving now; started working 2 days per week last week and just finished a Coping Skills group, in addition I continue to see a therapist weekly for individual counseling. Medication helps also, since, I have to manage my pain levels, migraine, PMDD, and do the care giving, cooking and housework as much as I can when I am up to it. House needs some repairs, we have no dryer, washing all things she uses in an attempt not to wet the recliner when she has been sitting too long, like table cloths, towels, shirts, and paper towels, just ends up being more work & washing I need to do, more money going out, because I have to buy a host of laundry additives to get the ammonia smells out, (the urine smell is nauseating and doesn’t help my headaches) and then there is the time, since the clothes have to be soaked. Oh, and the fridge is leaking, the car I use, the driver’s door can’t be opened from the inside. Should I just buy the pads I think will work better? How do impress upon her that she needs to do the leg pumps everyday and use her c-pap every night and use her nebulizer. I will take any and all suggestions. The short stretch compression bandages she has are too narrow for use on the thighs. We have tried neoprene waist trimmer type things, but her legs have round masses on the inside and back of both legs (which have both been injured had had to be treated by wound care) so the waist trimmers often slide down and when she has her ‘accidents’ they really should be hand washed. Our sewing machine won’t work, but I am considering sewing some of the 4 or 6 in compression bandages together by hand with elastic thread, so it will make them 8 inches and/or 10 inches. What do you think? Last thing, my mom is very short - only 5 feet tall so bending over her large tummy and even wiping and bathing private areas is taxing. My counselor reminded me that she is at risk for UTI’s and skin damage from the incontinence issues. I will buy the two parts, one for the car door and the other for the fridge & fix them when I can. Any thoughts, suggestions or encouragement will be appreciated. Thanks for being supportive.
It consumes my life dealing with this. I'm there almost every day for a couple of hours.
So my advice is that you need the help of a facility for your mom. Edema is complex, time consuming and energy draining with all the complications. If you want to have any hope of continuing the improvements you've made in your life you must get help for your mother. Also a Primary doctor that will be proactive in ordering changes to prevent further deterioration of skin i.e. lotion every day on her legs.
Last know you are not alone. I feel your frustration in helping someone who seems to have no interest in helping herself. In my mom's case it's the Alzheimer's so I have to be the her advocate. But whatever is keeping your mom from being more engaged in finding solutions I'm guessing it's out of her control and you have to be the voice of reason.
Your mother needs long term care. It’s clear she is wearing you down.
Work with her pcp to have her placed in a SNF if she qualifies. Eventually her legs will “weep” & develop into a cellulitis which is an infection requiring antibiotics.
I was a home care nurse and taught families care of lymphedema. Even with proper wound care, managing lymphedema is a challenge. I would often go into a person’s home and perform perfect woundcare wrapping the lower legs in ace wraps, and in many instances the wraps would become loose within 2-3 hrs after I left (per the family) because the patient was wheelchair bound and using his legs to drive the wheelchair. So it’s not Medicare not covering the dressing materials; it’s the difficulty in treating the disease.
And of course with a high BMI it’s impossible to provide good consistent skincare with all those skin folds and crevices.
I know it’s difficult for you to care for her daily but you as the caregiver can only do so much. Her care is complex and won’t get easier. Begin talking to her PCP about SNF placement.
For house repairs, if I were you I would check with the local chapter of Habitat for Humanity, or the biggest (or richest, or most welcoming, or hopefully all three) church in your area, to see if you can get on their radar screen for assistance. You are exactly the sort of person they want to come alongside and help.
Agree with Golden that she could be better cared for in a facility where they would have acess to all the bandages etc that she needs.
Wide elastic bandages are not too expensive to purchase but the problem is that they will just drive the fluid further up her legs into her abdomen. All the fluid she is carrying probably accounts for a great deal of her 300 lbs so dieting is not going to fix that.
Have you been councilled about a proper cardiac diet and the importance of limiting salt and fluids. She will have to co-operate because she can't get food for herself. I do not imagine she feels much like eating anyway because she is so uncomfortable.
Caring for mom is beyond your capabilities at present which is not to make you feel guilty but a simple statement of fact. You are fighting so many battles on so many fronts that it is impossible to provide adequate care for yourself or Mom.
Sooner or later Mom's legs are going to breakdown,start weeping and become infected. work with her dr to get her admitted to the hospital where they can give IV lassie which is far more effective than the pills. While they do that they will probably put in a catheter so she does not have to go to the bathroom.
Dealing with the urine soaked clothes is a difficult problem but you may find it helpful if you keep a pail in the bathroom filled with cold water with a little bleach so she can drop her clothes in that.
I used to do that with my babies diapers. When the bucket was full spin and run a rinse cycle and then hot wash them.
How many other people live in the house/
Can any of them help out? They may not want too but get tough and set boundaries
Congratulations on the fine job you are doing getting your life back on track. it is not an easy thing to do with everything you have going on.
I agree with cwillie, that her health problems, if not caused by, through they may be, are very much affected by her weight and that that needs to be addressed. Your grocery bills must be high.
Next time she is hospitalized, before discharge tell them that you cannot care for her at home anymore due to your own health issues. Be clear to the discharge worker about all you are dealing with. I suspect she would do much better in a facility where her food intake could be monitored, laundry done properly etc.
And, I suspect, then you would do better as you could look after yourself without the stress of having to care for your mother.