She denies how often she gets up, yells my name, drinks tea, wants water, loses her emery board, can’t find her Kleenex. Don’t get me started on the fixation with her bedcovers being straightened. All. Day. Long.
she denies she pooped in her commode, picked it up, put in her depends and went to restroom to drop in toilet. Thank god I caught her before she flushed
She broke the door off hinges in her room (sliding/pocket door). She denies standing banging/rattling door handles (baby safety knobs) even when I’m standing there
she denies she spills water, lies about trying to hide things she’s tried to “help”, denies she sleeps & naps all day
this all would be fine, but she has become demanding, requires immediate responses and help within seconds. She won’t wear her hearing aids anymore. She’s destroying my home, falling, causing so much anxiety. I’m a German Shepherd, always on alert. Always.
she is final stage kidney failure, here at my home, with hospice 2x week
any suggestions to get her to accept her limits? She says she does, nods, agrees, lots of “I know” but she just doesn’t seem willing to acknowledge she, SHE, this previously proud, clean, smart woman could possibly becoming incontinent, cannot remember things, cannot take care of herself. She thinks she can function, when she can barely walk a few steps and hardly hold a glass of water
She is dying. She knows it. But accepting the reality of what that means and the loss of dignity seems to be the biggest roadblock right now.
I’m just tired. No sleep. Pins and needles and resentment. And sadness. It’s hard. :(
1 - more help to come in so you can sleep and do "me time" things: hygiene, eat, grocery runs...
2 - Talk to doctor about her demands which may be based in anxiety. A mild anti-anxiety medication could help her to relax more and be easier to live with.
3 - If 1 and 2 are not working, it might be time to acknowledge that she needs placement in a nice facility. Your needs must be met as well as hers.
If she does have dementia, then don’t bother trying to correct her or educate her, it won’t work. Dementia is progressive and it will only get worse. If it’s a true safety issue, she may be better in a facility that can watch her and keep her safe. As you are finding out, one person cannot do it in a regular home setting. It’s just too stressful and yes, it can ruin a home.
Or, if hiring help in the home to help with cleaning, errands, cooking etc, that may be some assistance for you, but it doesn’t come cheap.
Put her in Hospice at a facility where you can visit her and they can achieve a more constant result in medicating her and keep her more relaxed and comfortable . Some can not or will
not die peacefully with their child bearing witness 24/7 to them dying .
In our case, dad actually only had a few weeks left once he was in the program. I wish we had gotten him in it sooner , it would have saved a lot of grief for both dad and the caregiver and the Primary Care doctor only needs to certify that he believes the person is in their last six months.
And then you wrote this as a reply to againxf100's comment when she stated that you need more help. Note -- others have also stated that you need help.
"...she is little trouble, yet. I am exploring overnight help if it progresses more during the night."
Sounds like you definitely help NOW. Why are you minimizing the effect this is having on you in your reply to againx100's comment?
Hospice should be able to help you out temporarily with respite care. Perhaps they can also recommend part time caregivers for when your respite allowance is used up. Or do you have family members that could spell you? I know from my experience I couldn’t have done it alone.
My stepmother passed before my dad who had dementia...she was 8 years younger. The stress of taking care of him had her abandoning any healthy eating, and she ballooned up to over 300 pounds, got some form of dementia herself (and/or finally just gave up due to the stress) and finally passed after her gastric bypass ripped and she got sepsis.
Looking after my dad, even "from a distance" last year when she was gone, I too abandoned my healthy eathing and exercise and gained 30 pounds. He refused to go to a home for the longest time...it was a 3 hour (one way) commute to his place for me. When I wasn't at his home, I was making countless phone calls on his behalf and arguing with him over the phone ("I remember what I want to" was his mantra). Between that and a 50-60 hour a week job and a husband was way too much. When finally his best friend admitted defeat looking after him (there literally WERE no local services as he lived in timbuktu), he finally agreed for me to move him into an adult family home.
There is a book called the 36 hour day. It's called that for a reason. PLEASE get some help for your own sake immediately. You can not give up your future for her present.
By kidney failure do you mean if not for hospice she would be on dialysis? The two people I know who were on dialysis, quit and went on hospice were gone in 2 weeks. The poison going into her system is making her Dementia worse. In my one friend she had no Dementia but ended up having dementia like symptoms.
A lot of the behaviors that you list are consistent with dementia.
If this is the case mom does not "know" what she is doing.
I suggest that you talk to the Social Worker from Hospice or the Nurse and ask for Respite.
One of the GREAT benefits of hospice is that Medicare or Medicaid will cover almost 1 week of Respite each year. Take advantage of this.
If your Hospice does not have an In Patient Unit they will have arrangements with any number of Skilled Nursing facilities where they can place mom for respite. And you might consider leaving her there. There will be staff 24/7 that can care for her, Hospice will still see her. She will have to pay "room and board" at the facility but it might be worth it to save your sanity.
You aren’t able to handle your moms illness along with her prognosis. Tell your doctor what is going on. See a therapist. Hire help. Go for walks, Sit in a park. Do something to soothe yourself. Sometimes we feel that help will be too much trouble, that we can do what needs to be done easily enough but obviously YOU need help. This is hard. Very hard. I am glad you came here to vent but now take some action and call an agency and just try getting some help in. Don’t try to manage the care of your dying and demented mother without rest, hydration, good nutrition and help. Hugs
No suggestions to get your mother to accept her limits. That ship sailed with the dementia dx. With this limited time left for her I'd let her be. Hire some help to relieve you and allow you some private time.
I'm sorry you're going thru this. Best wishes moving forward
I think the bigger question now is that you are facing tough decisions that won't be without tears and grief on the part of you all, but that can only be avoided at great cost. Your life should not be sacrificed upon the altar to someone who has already had her life, imho. I sure do wish you the very best and I am so sorry.
She is wearing you out. She's the one who is dying, but it may be you who beats her to the punch if you're not careful. Caregivers have a 63% higher mortality rate than non caregivers, and 40% of caregivers caring for someone with dementia will die before the on being cared for from the stress. Those statistics are real and very scary.
You need more hands on help with your mom. Please hire some ASAP(with moms money)so you can get some proper rest, so you don't become one of the statistics.
And whether it's the medication or dementia, your moms brain is no longer thinking straight and there's nothing you can do about that, so quit wanting her to be like her "before sickness" self. She can't be that person hard as she may try and the sooner you can accept that the easier it will be for you.
It's hard, many of us know that, but when dealing with a broken brain, we all have to learn to choose our battles wisely. And a lot of what you have described isn't really worth fighting over.
Keep in mind too that when the time draws closer to her dying you can have her transferred to the hospice home where they will look after her 24/7 and if she passes within the week Medicare will cover it 100%. If she would have to be there longer than a week, it then rolls over to private pay.
Please start taking care of yourself, as you are beyond the burnt out point and I'm sure if your mom was well, she wouldn't want you killing yourself over her.
Your profile says that she is in assisted living. I’m confused. Did you take her home? If so, please look into hiring additional help so you can get some much needed rest.
I would talk to hospice about her agitation - breaking the hinges off the door took some work! I would want her dosages re-evaluated and probably increased a little bit.
Good luck. Take some deep breaths. Since you say she may only have weeks or months left, it's not a horribly long time but I'm sure every day seems like a week. Please get help. Before my mom went into AL, I had lots of caregivers and it helped keep my sanity, something that's very important!
You need some help ASAP. This level of care is much too much for one person. I'm curious - from your profile, she was in AL, but now she lives with you. For how long? Did she run out of money or her condition deteriorated beyond AL capabilities?
Anyhow, you need caregivers. I would also talk to hospice about something to calm her down a little bit. Sounds to me like she's anxious and that can not feel good to her. I think it would be very helpful to both of you.
I hope you find some relief.
she is on meds from hospice for pain and anxiety, with increased dosage at bedtime to help as sundowning was becoming evident.
she is little trouble, yet. I am exploring overnight help if it progresses more during the night.
it’s just clear the last few days she cannot accept certain aspects of her situation. And they all are relative to self respect, and refusal to acknowledge it at this point. How dare anyone think she could possibly touch her own poo.