Mom has developed breathing problems & edema & is seeing the doctor tomorrow. I'm just worried. Can you share anything that may be helpful?
I'm just worried and need a place to vent.
Mom has NPH dementia and has become more and more confused. Although NPH is different than Alzheimers, I would put her at Stage 5. She is in a wonderful assisted living place and receives excellent care there.
In the last week or so we have noticed that her breathing seems a bit labored and/or raspy. Then in the last couple days her feet (and now legs to above the knee) have started swelling and today started weeping to the point that it soaks her socks. She has never had swelling before.
We fully expect that this will be the result of congestive heart failure or something like it.
We have all the medical POAs in place, and POLST plus a very explicit Health Care Directive Mom filled out 5 years ago. Basically she wants comfort care only. Fortunately my siblings and I are all on same same page with her.
We are hoping that medication can give her some relief and comfort. That is our main worry, that she will be uncomfortable. I hate that she has the edema because I know that can be so difficult to handle, especially with dementia. I don't want to her to have to live the next year with skin breakdowns and such.
Thanks for listening, and sharing anything that might be helpful.
13 Answers
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Have you considered hospice for her?
Since she doesn’t want her life prolonged and all of the children are in agreement, there aren’t any obstacles in your way.
Is hospice care offered at your mom’s facility?
Or do you need to start looking into finding one?
Can you make a phone call to her doctor or nurse, and perhaps the social worker to see which hospice organization is recommended?
Hospice is wonderful at keeping patients comfortable.
Low potassium can also cause mental confusion. Before dementia, my mother was sounding terrible (called during my commute to work) so I stopped there on my way. She was looking terrible too. Seemed very "out of it", confused, etc. Blood work at the ER showed low potassium (in her case, she was drinking too many fluids.) Within hours of potassium drip, back to her normal grumpy self. When I last talked with the nurses, she had agreed to stay overnight. When I called her, NASTY NASTY telling me to take her home. I had gotten to work very late, so I couldn't leave. I had SIL, who was closer, take her home.
Yes it does sound like it may be heart failure or even kidney disease. Her Dr. should be able to put her on Lasix, to help with the water retention, however just be aware that Lasix does lower a persons blood pressure. My husband was on Lasix the last 22 months of his life, and the hospice nurses and I had to keep a close eye on his blood pressure as it would fluctuate greatly, and we had to adjust his dosage accordingly.
Probably not a bad idea to get hospice involved at this point too. It will be an extra set of eyes on your mom and they will try to keep her as comfortable as possible. Just make sure you do your homework, as not all hospice agencies are created equal.
Wishing you and your mom the very best.
If your Mother has never had heart failure in the past you may find she has a very quick and good reaction to the medications that can be given. These include diuretics which have a whole raft of side effects that come with them. Frequency and urgency of urination, the washing out of potassium and need for checks on blood work to replace K+ with medications, and etc.
There is no cure for CHF other than a heart transplant and that is not an option for your Mom. The doctor may suggest hospice and/or palliative care. She would continue in treatment for the CHF with medications for comfort, and to keep fluid being relieved out of the lungs and peripheral vascular system.
While you can't be CERTAIN until after her MD appointment, I think that your guess is a good one. I wish you luck, and your Mom. You cannot know how well and how thoroughly your Mom will react to medications, so this is one that must simply be dealt with. Hope you will update us after her appointment, and wishing you both good luck.
Mom's BNP came back very high (2,303) which the doctor says is " consistent with acute onset heart failure" . She will be started on a diuretic which hopefully will make her more comfortable. We will be needing to talk to the doctor again now that the labs are back, but will probably be getting hospice involved as soon as appropriate. The doctor did want to do an echo-cardiogram just to see what was happening as that may impact what medications are used. So we will probably wait till after that at least.
One of the hardest things is that Mom is so confused by this all, and doesn't remember that her feet are swollen, or that she is having trouble breathing. In fact she will say she doesn't have problems breathing, when in fact she is panting and gurgling at times. She just does not complain and is very stoic.
While we are figuring out the best way to handle this and support Mom I wouldn't be surprised to get a phone call at any time. Sigh.
Welcome to the world of Lasix. Your mom will now be on a diuretic for the rest of her life, and the bathroom will be her biggest challenge. If she isn't in diapers or Depends yet, start using them. There'll be so many accidents, because diuretics get rid of a TON of water very quickly, and trying to get to the bathroom in time is virtually impossible.
She needs to keep her legs elevated as much as possible, too. That'll make a huge difference. My mother has always refused to do that, so now they just have to put her to bed. She nevers refuses a nap, so this has worked well.
If it's any comfort, my mother has been this way for seven years. She's been on hospice care since January, but I'm not sure that CHF is going to kill her. She's a tough old bird and just keeps chugging along.
Being sick, and with dementia, is an awful combination as she can't remember why she is feeling this way. And her type of dementia (NPH) also makes walking difficult, so getting to the bathroom is tough. She HATES having aides help her with things (although she is never mean about it), so this is going to hard for her.
My siblings and I (there are six of us) are all going to be spending lots of time with her over the next few days to help her. Hopefully once the diuretics kick in the AL staff can provide what she needs. I have a call in to the AL to see about the possibility of hiring a full time aid for the next week as Mom is too weak at this point to go to the bathroom by herself or get out of bed or her chair safely.
It may sound harsh to many of you, but my family is very matter-of-fact about death. Mom's quality of life with dementia isn't very good (she even mentions that on her health care directive), so I think most of us kids hope that her heart fails gently one night soon and that she just doesn't wake up in the morning. She has lived 89 good years, misses my Dad dreadfully (he died 5 years ago), and has a family who adores her.
how wonderful, fantastic.
hugs!!
i wish your mother/you/your family well.
My dad had heart issues and later on a stroke. Both of my brothers have heart issues. It’s an ongoing challenge.
Your mom is very blessed to have a strong support system. It’s wonderful that all of you can be available for her.
My mom is the same as far as not wanting to impose on the staff. I wish that she could accept help without considering it an imposition on others.
Since my mom has been in bed her edema has ceased. She used to wear those stockings (which she hated) and they did help but were such a pain to put on and take off.
Being able to position a hospital bed in different ways helps too.
Will keep you in and your mom in my thoughts and prayers.
I've read that sometimes the lymph nodes can be compromised by cancer, and don't properly eliminate fluid from the body, and that can be a cause.
Chdottir, I hope that the diuretics quickly help your mother.
She is also very restless so we asked about getting her something for anxiety. Tomorrow we will probably be taking her out of AL for the next few days so she can be in her favorite spot (my house, where she used to live). That will make it easier for all of her kids to see her. I think hospice will probably be involved soon. We have a Zoom call scheduled with her doctor scheduled on Monday.
There are sooooo many questions now: Will they be able to stabilize her, how much care will she need afterwards and will her AL be able to provide it. They are good, but not a nursing home. I believe that an AL could do it if Mom didn't have dementia, but she does and really couldn't cooperate with care.
Susan
Hospitalization has been tough on her as she is very confused about everything, and definitely starts sundowning in the afternoon/evening.
We are hoping we get lucky and can find a home for a direct discharge. Otherwise she will have to go to a nursing home (strange place, visitation extremely limited), or back to assisted living where we will have to piece together extra family support and hiring help until we find a good family home.