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bemindful

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Joined
Jun 25, 2013
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61
Reason
Loved one DX
Diagnosis
01/2008
Country
US
State
Missouri
City
St. Louis
Well, we moved Mom back home because she wanted to spend her last remaining months in her home (she says she has six months but I would be surprised). I was willing to try. But it looks like she is going to have to go back. My brother is starting work 7 days a week, so there goes that help. My sister in law who was giving me 1 night of respite is going in for a hysterectomy. My mom cursed out my best friend who was giving me 1 night of respite (although she may come back realizing that Mom was hallucinating b/c of meds. Mom thinks everyone is drugging her now, simply to move her back to the nursing home).

The fact is, that she is getting bad pressure sores from sitting in her lift chair all day. She refuses to get in the hospital bed to relieve them and I can no longer lift her alone anyway to transfer her to more than the commode. She now refuses to take pain meds and is in pain all day. I am a sick zombie. I am going to have to put her back into a nursing home. She is going to hate me, but I can't do it alone. Several days this week I got less than 4 hours sleep at night. Throwing up in the morning before eating. Angry for being in this situation. Exhausted. She gives me guilt: "Who took care of you when you were 4 years old?" when i try to tell her I can't do it all alone. She will hate me and will lash out at me. This is very unhealthy. In her original Advance Directive she wrote that she wanted to not be a burden to her children. Now that the situation is a reality, she is scared, in denial, and is not facing the end of her life well. She is very scared and overwhelmed and there is nothing I can do about it.

Some days this week I have been so exhausted that when she wants something, I have ignored it. I didn't have a single ounce of energy left.....spiritually, physically, psychically. My boyfriend took off work one day just to get me because I was falling apart.

I wish I could do it all, like some individuals post on here, but I just can't. I don't have any answers and I don't have any help. Hopice is supposed to be a support with this and they really aren't. I need a counselor, or something. I am depressed, have lost a lot of weight, and I don't even know what it is to enjoy a day anymore. Unemployed, broke, and full of guilt.
 
OK, a little tough love: You CAN'T do it all yourself, and you need to stop trying! Yes, you probably would benefit from some counselling... talk to the hospice nurse. Our hospice provided both a chaplain and a counsellor for caregivers. You would probably also benefit from some anti-anxiety meds... talk to your doctor, or again, talk to the hospice nurse. Your mom has already run you ragged... it is ok to say no to her sometimes! Yes, make sure her health and safety are priorities. But when she is being difficult just to be difficult it's ok not jumping every time. If she is having problems with her meds, again talk to the hospice nurse... tell her what's going on, they may be able to prescribe something different with fewer side effects. If your mom won't take her meds... sneak them into her food if you must. It will make your life easier, and quite honestly, they'll make HER life easier. And yes, if mom needs to go back to the nursing home, do it, for everyone's sake.
 
Katie is right--no one can do it all. You need to talk to Hospice before you put her back in the home--they should be able to ramp up her care for you. She does not need to be in pain! you need sleep and you can can't do it all. they may have a hospice house for her that she can go for respite--or they might have volunteers who will come and sit with her while you rest. ask the social worker to help you. that is their job. Hospice is also for the family--you have a huge burden and they will help.

I also agree with Katie that you probably need to sneak in the meds if she in not in her right mind. they will help her and you.

No matter what you decide to do, do not feel guilty--you have given your all. don't care yourself to others--Being a Cals is unbelievably tough and is different for everyone.
 
I'm so sorry for the pain you're going through. You won't be any help to your mom if you are not healthy. She may not understand why you would put her in a nursing home, but at this point, it sounds like she's questioning everything you're doing, so you don't win either way. It sounds like you've already done more for your mother than most would be able to handle. you can only give so much of yourself before there's nothing left to give- and that's no good for anyone.
 
I have talked to the Hospice social worker. She is a gem. She thinks it is time for a nursing home for all of our sake. There is no resources for respite. One hour every couple of days is NOT enough. No way. And volunteers cannot do anything...suction, etc. So they are not really for the caregiver, they are for the PALS.
The social worker promises to be an team member advocate for Mom in the nursing home. Mom doesn't have much time left and she is angry, stubborn, and for some reason holding on to a lot of control issues. I mean, I could never understand her position. I could only imagine what it is like to not be able to have control over ANYTHING. But the control over the small things without trusting in the people that love her the most. I want to be her daughter again. I want to be able to rest knowing she is safe and cared for. If we keep this up her pressure sores are going to become infected and she just doesn't want to cooperate. Even if she moves to the hospital bed, I have already strained my back and I don't know if I can pick her up (I am only 125, she is 160). I don't know. I am so sad. On the one hand I fear her feeling abandoned, but I can care for her more if we have a team and I can see her every day in a safe place.
She is going to be so depressed at first. I swear I wouldn't wish this disease on my worst enemy.
 
ALS sucks. I am sorry.
 
You've done more than anyone could expect... and isn't enough. Don't feel guilty for that! There will be a team of people helping her and you get to be there for her. I'm so sorry you're going through this.
 
Thank you for your feedback. I know I'm doing the right thing with the awful limited resources that our society provides for people with disabilities and our elders. Mom worked hard all of her life. But it seems that in our society, the aged are overlooked like 'useless' to progress, so we only have the minimum of sustainable options. I swear, after this is over I am going to be an advocate for the aged.
I am not telling Mom what we have decided until we know the place is secured. I am afraid of the backlash. It isn't the best option, but I am asking the social worker to come in with me to give her the news. If I do it by myself I know I will fall back into the familial role of the daughter and start 'negotiating' what I know is already the best option. Although, how she can imagine that this can continue is denial. And I know denial is pretty powerful.
But frankly, I can't wait for a full night sleep, to be able to shower regularly, to eat regularly, and to be able to visit with her without being exhausted, stressed out, and upset. At least, that is the plan. We'll see.
 
Yeah, what Barbie said! Sounds like you have a good plan...
 
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