My wife started hhd in March of this year. I am her care partner. I thought that I was ready for this, but I was wrong. She has a lot of difficulty with other issues (restless legs, anxiety) that have negative effects on our ability to continue treatments to completion. I am very frustrated and depressed and need someone else who has done this as a partner to tell me ways to overcome the way that I am feeling.
Clark, I can absolutely see how your expanded care partner role could be overwhelming, frustrating, and depressing, given your wife’s other health issues. I am so sorry to hear how difficult this has been for you. After 4 months, we like to see that folks have developed routines that make the treatments go better. It sounds as if you and your wife are still in problem-solving mode.
We do have a number of care partner resources on this page, that perhaps you have seen? Please let us know if we are missing something important that pertains to your life.
Talking to care partners can help you to see what is and isn’t “normal” and can give you advice that may be useful. If you are on Facebook, I suggest that you start with our HDC Facebook group ( https://www.facebook.com/groups/HomeDialysisCentral/), and this one is specific for care partners (https://www.facebook.com/groups/106259106165856/). You are not alone.
Hi Clark, I’m a social worker. When I worked in dialysis, I appreciated when patients or care partners talked with me about the emotional issues they were having so I could listen and offer suggestions. In addition to the online sources of support, many dialysis clinics have established patients who are willing and able to help newbie patients adjust to their new life. I always felt like patients learned a lot from other patients that staff who had not done dialysis couldn’t teach.
Has your wife reported her symptoms to her doctor. Restless legs syndrome can have many causes. Here’s info from WebMD on RLS.
It’s not unusual to have depression and anxiety when you’re adjusting to kidney failure and dialysis. Doing dialysis at home requires some getting used to. Most people over time feel more confident, which lessens the anxiety. I’d suggest encouraging her to talk with her social worker (with you too if you’re able to do that). Perhaps the social worker can identify the source of the anxiety and help her (and you) learn how to control it. She may or may not need anti-anxiety drugs for a while. Please don’t suffer in silence when you have your home training nurse, doctor, and social worker who can help.
I am looking for partners to converse with to find solutions to my frustrations. I will give you an example of what I would like someone to give advice in regard. My wife takes requip for her legs. She didn’t tell me that she was completely out until she had missed a day. I called her Nephrologist office to get a refill. He increased the dose and called a new prescription. We went to pick up the new scrip, she took 2 pills and threw the rest away along with her empty scrip. I dug through the garbage but the new bottle was open and I found only 1 pill. When she doesn’t take requip she cannot sleep so went the weekend with very little sleep. When she does this she falls and did so several times. If I try to resolve things like this for her she says that I am making her look stupid. I’m not emotionally equipped for this kind of thing.
This does sound very frustrating and exhausting! Did she say why she threw her pills away? I’m wondering if she could be suffering from depression or if she could be cognitively impaired. If her cognitive functioning hasn’t been tested, that might be something to ask her doctor about a referral. Kidney failure can affect cognitive functioning, especially if the dialysis is not removing enough wastes. How is her dialysis adequacy (Kt/V)? Did you tell her nephrologist what happened with the pills? Did he have any suggestions? Until she’s more reliable in taking her prescribed drugs, can you keep the bottles and give her what she needs when she’s supposed to take her pills? Do you have family or friends who can help you with her? If not, do you have insurance or can you afford to hire help to take care of her?
When her kidneys failed, did your wife want to do dialysis or did she do it because her doctor or others wanted her to and she didn’t know she had a choice? Those with kidney failure always have a choice as to whether to treat it with dialysis or choose conservative management. With conservative management, symptoms are treated without dialysis until death occurs. Hospice or palliative care agencies can help you and her if that’s her decision. Her nephrologist could make that referral.
The pills were thrown away by mistake. I am giving her antibiotics for a uti and understand that those can be causes of confusion. Her Kt/V is 2.17 and bun was 35 on our last labs a week ago. She is usually quite reliable with her requip as the restless legs are torture to her.
She did not want to start dialysis, but was in hospital for low sodium. Her gfr was below 10 so they started dialysis while she was there. Treatments are often difficult; her blood pressure is consistently low and her cath has been partially blocked. We went today to have the cath cleared.We have a living donor but she needs to lose some weight and become stronger as a walker to be ready for transplant. I do have insurance, but our finances are stretched. We are past out out of pocket max, but there are lots of peripheral expenses that insurance doesn’t pay. I still work so am not always able to be home to help.
I communicate more with our hhd nurse than with her Dr, but the nurse passes what I have talked about along almost immediately.
How is her appetite? Is she losing weight? If so, be sure to keep her nurse informed. As she loses weight, her target weight for dialysis will need to change or she could get fluid overloaded. Is she working with the dialysis dietitian on what foods are filling while low calorie/low carb? Since she needs to gain strength and improve her balance to avoid falling, she might want to ask her doctor for a referral for physical rehab to teach her exercises she could do inside your house until she’s stronger and at lower risk of falling outside. There are fun chair exercises that people can do to music. Ask her doctor of they would be OK. Maybe exercises like these, feeling stronger, and losing weight would help her feel less anxious and happier. Does she have any friends who could come visit while you’re at work. Maybe they could exercise together.
I just happened to get an email today from AARP about resources for family caregivers. You might want to check out these organizations.