Taking on the caregiving

I am going to be taking on my moms caregiving soon. My mom has CBD and is completely bed bound. She cannot speak or move herself. She is so rigid and stiff. I would like to know if you should wake the patient up at night to check them and change their diaper every 2 hours?

[NannaB]

Hi Ysanty, have you had experience of caregiving for someone who is bed bound before? When I worked in a care home we did check and move folk every 2 hours but if you are the only caregiver you will soon find doing this throughout the day and night will be exhausting. I don’t want to tell you anything that may seem obvious to you but if this is your first experience giving care to an immobile adult, you really need to be shown what to do. It helps if your mom is on a ripple mattress so the pressure on her body changes, pillows between her knees and under her arms, soft cloth in the palms of her hands so her nails don’t dig into her with clenched fingers. You will also need to know how to move her safely, using slide sheets so you never pull at her skin but this may be obvious to you. As I said, you may know all this so in answer to your question, I would say 2 hours is best if you can do it but certainly no longer than 4.

Best wishes.

XxxX

[Hidden in reply to NannaB]

Thank you NannaB. This is my first shot at being a caretaker. I don't think she is getting the care needed where she is now so I am bringing her into my home. She only has one caretaker now and I am being told she is moved every two hours but everytime I am there she is in the exact same position. She is currently on a hospice provided bed with air mattress. She has a pillow between and under her legs. She holds 4" unused paint rollers in her hands to address the nails. Thanks for the tip on the slide sheets. They are not using these now. Another concern I have is the ridigity in her right arm. It has contracted up to her chest which prevents air to her inner elbow area. The skin is getting soft and pink. Not sure how to work her arm to go back into a straight position. Thanks for your advice, it is re-assuring and very helpful.

[Kevin_1 in reply to Hidden]

Hi Ysanty

If you are in the UK you might want to ask the hospice to make an application for Continuing Home Care which funds care t home.

You might want to ask them what support is available in the community. There is often a service (Community Nursing) who might do the night checks / changing for you.

Hospices are usually very knowledgeable in this area.

Best of luck

Kevin

[Hidden in reply to Kevin_1]

Thanks. I'm in the US.

[Kevin_1 in reply to Hidden]

Oh, OK

Best of luck

[daffodil48 in reply to Hidden]

If she is already on hospice you can get aides in and equipment. Please check with them what they will supply

[kenh1]

Oh dear you are making me feel guilty. I have been caring for my wife who also has CBD for more than 5 years now and never get up to check the pad. For most of the time she has been Catheterised so we haven't had to worry about wetting except when the catheter blocks and bypassing. For solids bowel movements are quite regular and usually in a morning As for skin care the care workers and nurses keep an eye on this and ripple mattress and creams (Proshield is the best) have kept her skin clear and free from bed sores. If I had got up every two hours I would be dead by now. Carers need their sleep.

[NannaB in reply to kenh1]

You definitely have no need to feel guilty. The pads are much better nowadays that they keep the body fairly dry. Carers definitely need their sleep. Its really pressure sores if the person is totally immobile in bed that can cause problems as you know but you are obviously looking after your wife well and she is being regularly checked for sores so no problem.

XxxX

[Hidden in reply to kenh1]

I feel the same as you, let her sleep. I guess there are two schools of thought on this one. Absolutely check and change her if needed every two hours overnight OR let her sleep and change her first thing each morning.

[Marie_14]

This is such a selfless and amazing thing to do. It is also hugely challenging. I say no no no to waking her up and waking yourself up! You will need every ounce of physical and emotional strength to take care of your Mom. So lots of sleep is needed.

Are you going to be the sole person to take care of her? Again I have to say I think you need help. It is much harder than you might think. So please try to get another carer even if you have to pay for them.

Bed wise and pillows and cushion wise you are doing the rights things but please make sure you get lots of rest. Otherwise you will be ill and who will take care of your Mom then?

Please come back to us too as anything along the way which you need help with, you can bet others have encountered the same thing. People will help you when you feel like giving up and there will be days when you will feel that way.

Good luck to you and your dear Mom.

Marie x

[Hidden in reply to Marie_14]

Thank you for your words. I will have a hospice aid every morning for bathing. Otherwise it will just be me.

[daffodil48 in reply to Hidden]

I am in the US and from my research If you have hospice you are entitled to a lot more than just one aide. If you have the air mattress I believe you are OK and not have to change or move every 2 hrs. I am sorry but I couldn't do that!! that would be too much. you need your sleep. I am sorry I can't be of too much help as we are not at that point yet. Please listen to people on the forum who are or have been at this stage. They are a wealth of information. Sounds like you are in there 100% but you do need help!!!

[NHGrace]

Hi Ysanty. I’m with the group that says it’s vital to prioritize sleep! If I wake (which I do occasionally), then I check on my mom. But I don’t set an alarm or disrupt her sleep.

We live in Massachusetts and have very good free care - both the federal Medicare-covered hour daily from hospice, but also our city has a “frail elder waiver” delivered through a local elder care service provider - and that comes with an additional 10 hours (for a monthly copay dependent on her income - we pay $10), rides to MD appointments, help with Home safety modifications, a fall alert service, and a case manager. If you look up “area agency on aging” and put in your zip code you might have something available as well. Sadly, the care system is so fragmented in the States that if you live in a rural or under-funded social service area, then these may not be available to you. I sure hope they are! Stay in touch. And stay strong. Your mom is lucky to have you. Big cyber hugs.

[Hidden]

Thank you NHGrace. Thanks for the info. We live in a pretty small city in Texas. Chances are they offer very little but its worth the research. Thanks for your hugs.

[Marilyn_cbd12]

Hello. I am in the US, and husband has CBD (12 years, but have not had the kinds of problems you are encountering, with intensive care needed night and day. So, I don't have direct experience with those aspects of these illnesses, but I think it likely that there are some community resources available which you may not know about. How to find them? Might start with her doctor's office and ask if he/she can put you in touch with geriatric care social worker. This individual would have a good handle on what is available in your area. Medicare may pay for some of the care needed and there may be state programs, as well. Is your mother a veteran? VA has tremendous resources. I went, first, to a local Alzheimer's support group for a year and learned a lot about community resources from the Alzheimer's group meetings. That might be helpful to you, if someone can stay with your mother while you go to a meeting. And, finally, have you ruled out trying to engage a different caregiver ? (I think you mentioned that you were disappointed in care she was receiving, but it wasn't clear to me whether that was care provided by a relative or compensated service provider. ) I wish you well - this is a big job, however you structure it!

Marilyn