I am primary caregiver to my mother who is 86 - she has mobility issues, an ostomy and gets easily confused. She lives with me and my husband and spends most days in her room on her bed since she has difficulty using the bathroom so she has a bedside commode. I bring her her meals, help her with changing her ostomy bag, getting dressed, her meds, showers and most everything else. My husband and siblings think she should go to a nursing home but my dad just passed away recently, so I feel like I would be abandoning her. I’m considering home health aides because she needs assistance with most everything and I would like to take a break every so often. My husband works from home but is not comfortable helping her when I am gone. We also are basically tied to the house because it’s not safe for her to be alone. She is also convinced that she can do things on her own and will try to prove it by transferring from a chair to her wheelchair without assistance which she has done in the past and fallen. She can be critical of me by saying I didn’t do this or that, mostly because she wants me to be with her at all times. She complains most days as she is bitter that she’s old and thinks life has been unfair since my dad passed. I tell her to focus on the 66 years of memories but all she talks about is him dying. I get she’s still grieving as I am, but I am overwhelmed, emotionally exhausted and probably burnt out. I also took care of my dad for the past year and a half. My mother has had PT people and visiting nurses at times when they were in their own home but she always sent them away after a week or two. Even after recuperating after her fall last year she had me stop the PT person after 3 weeks so she never fully recovered. I just don’t know what to do - she tells people she’s lonely but when I offered to take her to the senior center - she adamantly said no. She talks behind my back….They tell me but she tells them not to because I’ll put her in a home. I have also confronted her about things she has said but she denies it and says they are lying. My husband and siblings get frustrated because they know what I do and feel she is ungrateful. I’m at a loss - I don’t want it to come between my husband and I (yes we do argue at times about the situation), also I don’t want to become bitter. Anyone been through a situation such as this and how did you handle it?
Here is a guide that was given to me by a caregiver. I've found it very helpful:
Rules for engaging our loved ones with dementia:
1) Agree, do not argue
2) Divert, do not attempt to reason
3) Distract, do not shame
4) Reassure, do not lecture
5) Reminisce, do not ask “Do you remember…?”
6) Repeat, do not say “I told you”
7) Do what they can do, don’t say “you can’t”
8) Ask, do not demand
9) Encourage, do not condescend
10) Reinforce, never force
The caregiving arrangement needs to work for both the receiver and the giver. If it is onerous to the caregiver, then the arrangement is NOT working. Alternative types of care must be considered to avoid caregiver burnout. I think your idea of hiring in-home help is a good one, as long as you are not the one paying for it.
You should also think about researching facilities and touring a good one with your mom (don't tell her where you're going or why). You will see that there are some very well-run places and they are not awful. Your mom would benefit from the social interactions in a care community -- something you won't be able to give her. My MIL is bedridden in a LT care facility and doing extremely well. I wish you much clarity, wisdom and peace in your heart as you work through the options.
She should be encouraged to go to Adult Day Care, don't just ask her. Once there I am sure she will find an activity that she could get involved with. Just like a child does not want to start school, once they are there it becomes part of the daily, weekly routine.
I would start with the caregivers, tell her that they are there to help you. Give them tasks to do then find a reason to leave and the caregiver can watch mom and help mom while you are gone. This will get her used to having someone else help out. She can't "send them away" because the caregiver is there for YOU not her.
I think it may be getting to a point where you might have to think about Memory Care. Or with the ostomy it is possible that Memory Care might no t accept her and you will be looking at Skilled Nursing facility.
So, the first thing I've done is have her pay for a cleaning lady to do the things she can no longer do. Change her sheets, clean her room, clean her bathroom (ewwww) and then work on the common areas as they have time.
Next I will be hiring someone to sit with her when I have to (love to) be out babysitting for my grandkids. She can be alone but she could really use some direction to do some things. She doesn't cook so maybe they can do a meal, play cards with her, etc. Although she can barely play the last game she is still able to play. But that kind of stuff.
Agree that she should not determine if she still needs PT or other services. I basically had to force my mom to continue with PT and am now forcing her to get a sleep study done since last time she was in the hospital they thought they witnessed sleep apnea. She could care less about doing these things but I need to know what we're dealing with and if it can be improved. So....
The negativity is hard to take. Yes, as you say your mom is still grieving, but that seems to be such a focus on negativity in a lot of our elders especially with dementia. It's tiring to hear. I want to bang my head against the wall sometimes when she complains about everything. I just try not to really engage or offer one comment trying to put a positive spin on it which usually is ignored. Oh well. I just try not to get sucked in to her negativity and try to protect my mood from the downer negativity can be.
My mom also refuses to go to the senior center or other social things I offer. Basically her entire life is spent with me or my sister. Ugh.
Please get some in home help. If that is not enough, then you will need to look into a placement in an appropriate facility for her. No one wants to go to one. But it is often necessary. Both for her safety and for your sanity. You would not be abandoning her by placing her somewhere. Again she won't like it but at some point, like now, that really is no longer the issue. Accept that she'll be upset and that's just the way it's going to be. She'll adjust to whatever changes are coming into her life and you can have some space to breath and be a wife again instead of mostly a caregiver.
You either need to get in-home help - a lot of it or consider placing her in an appropriate senior housing. Placing her in an appropriate facility is abandoning your mother - it is taking you, your husband's lives into consideration AND your mother's well-being into consideration. Yes your mother will not thank you for additional in-home help or being placed in a facility - but she's not thanking you now either.
By placing her in a facility you would still be her primary care giver - only you will have people trained and there 24/7/365 for her round the clock care. Your responsibility will be to make sure she is getting what she needs. You will also be able to visit her as her loving daughter and not a stressed out care-giver.
I wish you and your family the best.
Look into Skilled Nursing Facilities for your mother right away. If that doesn't work out for whatever reason, use her finances to hire in-home caregivers to do what you've been doing for all this time now. Enough is enough. Nowhere is it written that a daughter has to sacrifice her entire life and marriage to look after a mother with more issues than Newsweek.
You will be more than happy to visit her a couple of times a week at the SNF once you get her placed.
Wishing you the best of luck making a decision and standing by it.