My MIL (91) has Alzheimer’s. She moved in with us this year (my husband and I both retired December 31st - yes, we really messed up our retirement within three weeks of starting it). We did it for all the “right” reasons. On top of that, we have the moral high-ground over other family members who refused to take her - yeah, ask me how that’s working out for us! It’s not that I don’t love my MIL - there are times when she is a sweetheart, but there are times when I am seriously doubting my own sanity. She pee’d all over the house in the first two weeks she was here (yes, we use incontinence pads, she lowers them to pee on the floor then pulls them back up). Solution, we got a motion sensor. Great, no more “accidents” but now, I am up four (minimum) times a night with her wandering around and needing the toilet. I’m working on an average of 2-hrs sleep a night for the past eight weeks. That is an indicator of where I am emotionally, but it isn’t the problem. She treats me (actually is convinced) that this is a nursing home and I am staff. She orders me around with a very disrespectful and nasty tone. She is convinced my husband is hers (no matter how many times we try to convince her otherwise) and thinks I am the hired help trying to steal her man. It was mildly amusing to start with - we didn’t really think she believed that, but as time has gone by, it is becoming downright creepy. My husband doesn’t want to be left in the room with his mother because she gets very inappropriate.
Add to that the belligerent attitude, the constant (CONSTANT) complaining and the way she expects me to jump when she says so - it’s making me crazy. We humour her every whim - my husband won’t ever push back, I try but she tells me she’ll report me to my supervisor if I don’t do what she wants. It is the hardest thing I have ever had to do, and there is no end in sight - this has to be the healthiest 91-yr old in history - apart, of course, from the disease slowly eating her brain. I feel like it’s eating mine too. And it is blowing our once happy home apart. My husband and I snip and gripe at each other all day long. I never thought we would be here so soon into caring for her. I don’t think anyone can tell me it will improve, but lie to me please - I need some hope.
All the best of luck, my friend.
You are still in this early enough to make a plan to get her moved into a facility. Talk to a social worker. Work with the social worker to get your MIL the professional care she needs.
Somewhere in the past, you made the Noble Promise to her or to the family not to put her in a facility, correct? You viewed what was to come when she moved in with you through rose-colored glasses. Now you’re suffering the harsh realities of life controlled by dementia. I’m sure she would be absolutely mortified if she could have predicted the future and see herself as she is now.
You have a choice. You can gamble with your future and her’s and keep things status quo. Or, you can sit down with your husband and his family if he has any sibs and admit that this isn’t working out. Sure, you can import in-home health care. You can send her off for respite care once every few months so you and hubby can reconnect with each other. You can delegate some of the nighttime potty trips and other care responsibilities to him. You can take her to the doctor and have her meds adjusted. But, 90% of the time it will still be the three of you. You are doing the work of three shifts of trained caregivers around the clock
How long you can tolerate this situation is up to you and your husband. It’s ok to admit defeat and say “we can’t do this anymore. We gave it the old college try and it didn’t work.” She can’t help who she has become but that doesn’t mean you have to sacrifice your own lives for her.
It doesn’t make the SLIGHTEST bit of difference what her “tone” is. She has dementia, and THAT is what you are hearing when she talks to you. Because of her brain illness, she is no longer responsible for her behavior.
As I continue to read your narrative I find wonderful comments about all you’ve learned since you began this work. Be proud of yourself for your honesty, your love for your husband and your life together, and your intelligence and increasing sophistication in dealing with a dementia victim.
In our situations we found that the closer you are to her potential residential site, the easier it will be on you, and the better for her. If you can arrange short frequent “drop-in”visits, great!
Deal head on with flashes of guilt, because you’ll have them. If you’ve done as well in the future as you’ve done in the past, “guilt” is NOT AN OPTION!
You deserve your own life.
And I'll just say it. It kinda sounds like you guys are a bit (or a lot) in over your heads, as they say. And, that's ok. There's such a learning curve to all of this. One thing I've learned? I want to make sure my mom is taken care of, emotionally, physically, financially, etc. And I'll never give up on doing that. But when I became unable to provide that care myself, and when changes were made? Turns out, it all worked out ok. I knew for the longest I was in over my head, but until it actually changed, and I look back, it wasn't until then I realized the insanity of what I was trying to do.
Hugs.
Not knowing everything about advanced Alzheimer's Disease and not having had the training and experience needed to care for somebody who has it is not a moral failing.
You took your MIL in to ensure that she had the care she needed. You have made a good start and her condition has recovered well. From here, she needs more than you and your husband can provide, no matter how hard you try. Remind yourselves sternly that the sole aim is to give her the care she needs; and surrender any unreasonable and counterproductive expectations you may still have of yourselves.
Look at it from a different perspective, her being in a facility will provide her with a village of people to boss around, plus there are 3 shifts, so no one is being sleep deprived. She will have lots of room to roam around, lots of different faces to interact with. She will have a base schedule and wiggle room to be who she is now and who she evolves to be.
You can go visit and see that she has her needs met, any special treats and turn around and go home.
Facilities are equipped to deal with human bodies that no longer have sound minds. They have the staff and resources to give that person a reasonably decent existence. And quite frankly, that's all you can expect dealing with this damnable disease.
Alzheimer's robs a person of so very much, but we don't need to let it steal our lives prematurely. Love and care don't mean sacrificing your wellbeing.
Find a certified elder law attorney (www.nelf.org) will help you find one in your area, they can help ensure that dad isn't left destitute and impoverished by placing her in a facility that will give her the care she needs.
Perhaps now you can see why other family members said no, propping up some situations only cause greater harm when the bottom falls out, they were wise to step back.