I have my mom living with us now after many years (over 14) of running to her house for every little thing, cleaning it, maintenance, etc. Now that she is here, I have established boundaries, rules, reminders, etc.
I had to do it as she is emotionally exhausting to me- she is very needy - so after all of these years I finally had to get firm. She also never listened to me so that's why she is in the shape she's in (another future post). She says I am bossy but it's for her own good. I guarantee she would have been bedridden by now if I didn't make her do for herself.
She is now wheelchair bound but still able to do for herself within the chair as well as get herself in and out of it so I am blessed on that part. If the time comes that she cannot, she will have paid help or be placed.
I thankfully work from home but my day starts very early so she is aware that she has to do for herself at night and during the day. I help her out throughout the morning, day and at night as needed as well as at lunchtime and after I log off (it's mostly just getting her something to eat). I have made it clear that my son and husband have needs too and they are not going to be neglected. So, here are my boundaries/rules. You may find some funny or helpful. What's yours?
1. On work nights, do not get me up for something that you can do. I will check on you early in the morning and get your breakfast ready when you get up. During the day, you are on your own and especially when I am in a meeting. I will be aware if it's an emergency.
2. If you're hungry, there's plenty in the pantry and fridge- all you have to do is look.
3. I do not need to justify what I am doing in my home. If I want to paint every room every day I will.
4. We will eat supper after I work out.
5. If you don't like what's for supper there's a microwave meal.
6. When we run to the store or other errands of an evening and you don't want to eat so late, there's a microwave meal.
7. Saturdays most weeks are for my husband and I to go out and enjoy ourselves (we also use that day to see homes as we are house hunting). We will be home when we get home. No, I cannot give an exact time.
8. Pay attention when the Physical Therapist comes. You need to do these exercises every day. I should not need to remember them for you.
9. Look at the exercise paper the PT left for you. I cannot exercise for you.
10. We are not a 5-star restaurant, Assisted Living or Nursing Home. Meals will happen when and as they happen. I promise you will not starve.
11. I am not doing laundry every day. You have plenty of clean clothes for the week.
12. I have locked up my house, turned off lights, etc. for over 20 years. I do this every night. Yes, I remembered.
13. Once we move, you will have your very own area that is wheelchair accessible and with a door that locks from our side.
:) :)
I wear gloves. I use a postpartum bottle to squirt some water in the back area, then squirt some soap, then I tell her or guide her hand there so she can wash herself as I squirt more water until it's clean. I do the same for the front. Then I hand her a towel on a hanger so she can dry herself, then she puts the towel back on the hanger. Then I spray down the toilet seat with rubbing alcohol then wipe it clean. No touching.
That is a really smart idea!
I remember when I broke my right arm and couldn't drive. I let my parents know about. The next day my Dad asked me to drive him to the barbershop.... where is my helmet [had bang head against wall].
If she starts pushing back, remind her that this is the care you are ABLE to provide. The boundaries are there to preserve your health and sanity as well as maintain her health and independence.
Remind her that if she needs more help, then it is time to investigate the OTHER options for her own health and safety.
And yes, definitely, they will take things, toothpaste, jewelry, clothing, eyeglasses, without a clue, that they belong to someone else. That is dementia and memory loss. It is their reality, their world.
Deb RN
Deb RN
She deserves better & you are worn out, resentful and too angry, please get some HospiceCompany to refer you to a family therapist! You probably will NOT like what I wrote but it is all true. if you are religious see your pastor for a long talk!
Thank you for posting and letting me be a little bit of a devils advocate!
I do think that you should at least add a one day a month. that she gets to go out if she wants like to get her hair done, Out to eat, get a manicure or pedicure.
You also should have a once a month Bingo Night for her and a couple friends.
If she has friends then she won't booking for you for her people time.
Your children might even be old enough to run a Bingo Night for Grandma.
I suggest you find a place where she can be happy and you can be unburdened.
Seven states is quite a move when you're already making a big change to your life.
Anyway, she gets plenty of love, attention and care and I actually don't have to repeat myself as far as what I won't be doing at a certain time. We pretty much have a regular routine where she knows what is happening at a particular time of the day- something I highly recommend whether or not your LO has memory loss.
I had to set boundaries because I really think she believes I am still under her roof and she can tell me everything to do and when to do it. I seriously have had to justify more than once why I was working down in my basement or doing some other needed things around the house. 🤐 Also, she would have me in the kitchen all day and waiting on her for every single thing. This would cause her to be even less mobile than she already is. It was really bad about two years ago when she went to a SNF for the first time for rehab. Something would literally be right there in front of her and she would get me to get it or do it for her- and there was no reason she couldn't get it or do it. It was very frustrating. I had to keep encouraging her to do things for herself or else she would not have come out of there and may even have ended up bedridden.
I appreciate all the responses from you here and have enjoyed reading them.
I have learned so much on this site from everyone and it has really helped my sanity at times. :) I pray that everyone can get some moments of peace during their caregiving journey.
She was a repeater as well.... She would barge into our area of our home and ask stuff like "what day do we go pick up pills", I would answer buy she would continue to ask repetitively until I eventually had to raise my voice, them I wouldn't see her for a while. She had a water fixation too that just about drove me to the psych ward. Sadly, 5 years ago my then 53 yo husband (I was 44) had a massive stroke. Although he was non ambulatory and had very little speech, I brought him home after 3 months of rehab. So now I had her and him and of course was promised all kinds of help that just never came. A year and a half I kept both of them home but it was eventually too much and she us now in a home. However, I still do have my husband here who is now bedbound, says yes and no but they're not accurate but mind you my man knows what he wants and thinks I am to jump and accommodate his every need. He has no empathy for how I feel and my stress (I have been in a wheelchair for a year and a half with ankle fusion, thyroid removal and rheumatoid) but that shouldn't factor in to how long it takes to accomodate him lol He has been tu tu tuing me thru this entire narrative (th is the syllable he replacss words with). Does that make me hurry and get that snack.... Nope. Because this is every night and if I don't force a little patience on him I would be frazzled. I love my husband, I do spoil him, but there has to be a line or I would be a total wreck. Who am I kidding, I already am lol but I will get up tomorrow with a smile and a song for him to set the mood of the day, I will care about doing the bills, keeping the house and keeping him clean and dry for the both of us. Because he can't care, I care twice as hard..... BUT if he can't find his remote control at 3am (it's on a string connected to his bed) do I get up to run out there and quiet his pleas by finding it for him, hell no! I need my beauty sleep and my mental renewal. Much love to all the caregivers out there.... I don't have time to proofread this the tututus are getting louder and on my nerves so I apologize for errors, just figure them out and don't dwell on the small stuff.
When it was raining outside I took her to an enclosed parking lot and counted 1,000 steps to make sure she got her quarter-of-a-mile walk. She enjoyed her walks and since it was routine (same time everyday) she never resisted.
Mum lived 15 years with Alzheimer's and ironically it was not that disease that killed her. She was an insulin-dependent diabetic with liver and kidney disease so even if she were a walkie-talkie self caring person she still would have died of those other diseases. She made it to age 90. Not a single mark on her skin.
There is absolutely NOTHING you can do to stop Alzheimer's disease...however, you can slow down the decline with routine and daily exercise. Mum was on hospice for two years, and not once did she ever have to take narcotics or psychotropics. Her routines kept her behavior in check.
You MUST know that decline is inevitable and caregiving gets MUCH HARDER the more incapacitated they become. You may want to discuss with your husband what are you going to do when you have to start changing her diapers and induce bowel movements on schedule. I had to bathe my mom for years, which includes keeping her private areas clean because she could not do it. The last thing you would want is a urinary tract infection. Her bathing days would be the same as her bowel movement days. As soon as she had a bowel movement I put her in the shower (the bath had to be torn out and replaced with a walk-in shower). With lots of installed side rails. I did not mind bathing my mom. I love mom so I did not care.
When mom became bedridden because she forgot how to stand (and it was a daily struggle to get her up), I had to go through enormous psychological adjustment myself. Accepting her decline.
When mom died after 15 years of battling Alzheimer's she was the center of my life for many many years so it messed me up psychologically to not have her around me. One year and 3 months later I'm still struggling but I am gainfully employed and working toward my Master's degree. Even if I don't make it through school it was really the only thing that got myself back to the pulse of the living but I still miss her terribly.. **BUT** I also accept her death as a part of life and hey I had my mum for 90 years, and I thank God for each and everyday I had her. Mom has everlasting peace..the pain is only reserved for the living, and nothing can ever harm her and transcended disease.
You better think about that kind of level of care, and start planning. It WILL happen.
1.did you ...
2. when is ...
3.Where is ...
4. Why ... etc.
Even if she follows your rules, expect other attention seeking behaviors to arise.
Start looking into care facilities, now, when things are relatively calm. Early preparation, will help navigate future issues.