Doubting my capability

Tross760

Mom has been on hospice three weeks now. This has been some of the toughest time in caring for me in my short experience. While she is unable to walk, mom is still agitated and restless. Always trying to get out of bed, talking about nothing that makes sense, being mean and confrontational at times. Mom actually  fell out of bed over the weekend she was being so unsettled. Thank god she didn’t seriously injure herself. Luckily only a couple bruises. 

I hurt my back yesterday changing out her bed linens. On top of being tired, emotionally and physically drained, I am now in pain. 

On top of this, I have to care for my dad, who of course my mother always spoiled rotten and he can’t see further than himself many times. 

I am stating to doubt my ability to see this through at home for mom. I want so badly to have her here, especially because she is so confused. Placing her in her time of hospice just seems so wrong to me. But I am so worn out. I don’t know what to do. With myself- my mom- my dad. 

On top of all this we are trying to maintain our full time jobs. That has been “fun”. I am nowhere near retirement so that is non optional. 

I think maybe I just needed to vent. Vent to people who wholly understand how challenging this is. 

LaurenB

Sigh.  You do have a full plate.  Is the hospice group able to supply you with more care for your mom?  They may think that you guys are managing just fine and may need to know that you are needing more help.  Possibly they have more options for more care to offer you.

Quilting brings calm

Tross - call them immediately.  If you cannot place her, then ask for 24 hour caregiving. Based on other posts you’ve made,  this would be short term and should be  financially doable.  If you decide to place her, consider it as being in her best interests.

Tross760

Thank you Lauren and Quilting. I will call straight away this morning and ask them for further help. I just can't manage all this alone.

LaurenB

I hope that the hospice care team is able to assist you with either more help or placement.  Hugs

Wilted Daughter

Tross - 24 hr caregiving, as suggested, seems to be the most practicable solution, now. You need time for yourself and to sort things out. Another thought is Respite. Either way if you need time to take care of your needs and plan for the caring of your LO's needs you should not feel guilty. Do not feel guilty trying to help your family, while taking care of yourself...it's a double-edged sword.

If you are still undecided or wavering about options/possibilities call ALZ helpline for an action plan. I sincerely hope things get better soon and you are able to make the right decisions guilt free. 

EHMil

This is so hard. I often have to remind myself of something a friend pointed out to me: If my mom were her old self, she would do everything in her power to spare me the grief and stress of these situations. She would want me to get help, even if that means placing her, and she would immediately forgive me any shortcomings. I hope that thought might help you.

Cynbar

Your hospice should have a social worker available to you. Call their office and ask to speak to her, an in person visit would be even more helpful. It is her job to help you evaluate the situation, discuss financial arrangements, go over your options with you, and help you put a plan together. He or she can be invaluable to you, please take advantage of this expertise.

jfkoc

and Hospice should have brought a hospital bed and given you to lessons for changing sheets etc. if they were not going to do it.....did they leave a lot of bed pads so sheet  changing is infrequent?

ladyzetta

Dear Tross,

Hospice is there for you as well so please reach out for help. They may not be aware of your needs. And jfkoc is right so ask for the hospital bed being able to give your mom different positions and with the side rails this may add to her comfort.  Hugs Zetta 

Tross760

Thank you all for the feedback.  

So far we do have a hospital bed, but no one showed me how to change it while mom is in it. I just kinda of figured it out. I had to roll her to one side and then to the other. Kind of the same as when I change her briefs. We can't get her out of the bed. We do have "chucks" as they call them, to minimize the leakage, sometimes at night though, with all her restlessness, they end up out from under her and there may be a leak. 

We have other equipment, but since she is bedbound, it is no longer of use. (Commode, shower chair, etc)  Some of the stuff didn't even get used before she could no longer walk or support her weight to move around. 

I have an appointment next week with the social worker, I didn't get a chance today, but I may call her sooner and ask for more help and advise for sure. I just can't keep up at this pace. I am also hoping she will have other resources she can advise on for my father. I cannot believe the amount of appointments and procedures he ends up with. It is absolutely ridiculous. There has got to be services and people that help with those who are housebound, right? If I wasn't here, what would he do?? 

My relationship with my mom was ALWAYS solid, but with my dad there is a different dynamic and I feel like I am ready to implode on him soon cause he has NO IDEA how much caring for mom and himself is running me into the ground. 

Thank you all again so much for the support and bulletpoints on what to discuss with the social worker. We ended up here awfully fast and I didn't really quite understand the scope of everyone's position within hospice so that we can get the best use out of them for mom (and us!) 

Trish 

feudman

Trish, you are wise to seek extra help before it pulls you down...you can only do so much. Unfortunately, there is a limit to how much care Hospice can bill Medicare for, and you may already be at or near that level. You can ask about volunteers, but that would probably only cover somebody to come in long enough for you to run occassional errands. 

If you need 24 hr. care, you will have to arrange it through an agency or by finding and hiring individuals on your own (through care.com or newspaper ads, etc.) and this will not be covered by insurance. Hospice sometimes can provide a list of home caregivers they work with. The only way you can get some paid home caregiving is if you can get her qualified for Medicaid. 

I wish you success in getting caregivers you both like.

M1

Tross you should ask about inpatient hospice or hospice residence if available. She might qualify. And you can at least ask the social worker regarding arrangements you need to make for your dad, she may at least have some ideas or be knowledgeable about resources. I don't envy you, that's a lot to manage.

MimiMinder

Sorry this is such a challenging time for you, but glad you reached out so others can give advice. When my stepfather was terminally ill with cancer and the end was near, my mother was determined that he would stay at home, even though she had to work full time and we had no respite or hospice care. (I don't think that was a thing in the '80s where we lived). We were beyond exhausted and realized we just couldn't do it any longer and placed him for a brief period before he died. No one judged us. No one blamed us. We had to not judge or blame ourselves. 

Think about the advice you would give your best friend if she found herself in your situation. What would you tell her to do? Can you see that you, too, deserve the grace you would offer a friend? Please realize you have done a herculean job and you can only do so much before it takes a toll on you, your work, and your family.