We have been helping my mother get moved to a very nice (knock wood, looks good at any rate) independent living facility near us. She and my Dad had been living in a home my husband and I own for the past two years because their living situation (mold, filth, hoarding) in their apartment was untenable and unhealthy. Dad passed away at the end of August, and I've worked hard to gain Mom's trust and to temper my own feelings around her to try to be as supportive and emotionally encouraging as I can.
The move, which we are taking very slowly, has been going well, but today I just feel overwhelmingly discouraged and angry. It isn't that anything terrible happened today just a normal day of picking through the piles and piles of trash, soiled laundry, pet and human waste stains and smell to ask Mom what we can get rid of, and trying to be patient while she loses focus again and again and again. She was also irritable today, which made it very difficult to get anything done (yesterday, on the other hand, was a good day). Also, although it was our choice to pressure them to move to our house (we bought a new house for ourselves), it's awful to see the condition it's in now. We put every extra penny and so many hours (10+ years) of our own blood, sweat and tears into making that house a home. Now it's covered with feces, urine, blood, dust, hair, dead skin, roaches. The stench is awful. It's what we knew would happen and was a sacrifice we were willing to make, but maybe it was a bad decision. The cheapest decision, in the long run maybe. Maybe the only one that would have gotten them to move from their apartment. But a painful, even hurtful choice, nonetheless. It's hard to see the results of our hopes and dreams and hard work reduced to a rehab project.
No real question here. I'm just looking for support and encouragement. By the end of the day I felt overwhelmed; I regretted deciding to help in any way, to be honest (which was always a choice) because I am faced with an impossible seeming situation: Mom is declining rapidly, we have been unable to identify any reputable memory care places in our area to plan to move her to in the future, she has no resources beyond SS and our state could really care less about folks who can't 'pay their own way' (SS is considered by many here to be just another form of 'welfare' my own parents were ashamed to collect it). Even if we rely on the state in the future, the waiting list is so long and there are so many people in much more dire straits than my mother that she could literally die waiting for a place.
I am committed to seeing this through with her and to helping her in any way I can, so long as I can retain my own mental and emotional (and physical) health. This move will be a huge downsizing effort and should help to solve a lot of the problems that have plagued us for decades, though certainly not all. And there is also the heartbreak of watching my only other immediate family member disintegrate more and more quickly, always just out of reach of my ability to improve her situation without having to be with her to ensure basic things like hygiene and eating any kind of healthy meal are taken care of.
For the countless others in similar situations I've read here. How do you care for yourself on days like I'm having? Days where all you can see is catastrophe and nothing seems like a solutions? I know waiting these emotions and thoughts out will help. Tomorrow I may see the positive side of everything. Meanwhile, it sure is painful and hard. What helps you in these moments?
Asking a person with dementia to deal with their hoard is madness.
I'm sorry if that sounds harsh. It's the truth.
I guess we'll see when the time comes for her to truly let go of everything else. That's gonna be a rough, rough, rough day for her.
retail therapy helps me, just looking through racks and getting out
walking was my biggest get away - a nice vigorous one hour walk once a day chatting with friends on the phone while i walked walking keeps me from gaining weight so i don't get stressed out about enjoying eating
It was a monumental task. It took four days and two dumpsters just to clean out his garage, and I brought in an estate sale company and a hauler to deal with the house contents.
As Barb said, move her first, then deal with the mess. Try to look at it as a bad tenant, because that's really what your folks were, and that can happen to any landlord with an investment property. (Our first tenants did $6,000 damage to a BRAND-NEW construction duplex in just four months.) Just try to disconnect from the fact that it was your parents and not a random tenant, and do what needs to be done after an eviction, as this kind of is. Bring in a hauler and have them just take it all away.
I guess men can save just as much according to your dad. It’s interesting what people save.
People have interesting collections of junk too! Not things that I would consider collectible, stuff like salt and pepper shakers! LOL 😆 Those things don’t interest me in the slightest, but whatever floats a person’s boat, I suppose.
Your mother is a hoarder with dementia. She will decimate YOUR home the same way she did her own. And the "maybe" pile will turn into the "keep" pile in short order bc it's impossible for her to let go of most all of her toxic garbage.
Cut your losses NOW, get mom placed and THEN see what you can salvage of your home before nothing remains TO salvage. The best self care you can give yourself is a solid plan of action to get her placed and stop allowing her to ruin your life or your home any longer. That means you're putting YOURSELF first, for a change, instead of allowing this madness to continue.
Today is the day to realize this and call an Elder Care atty to guide you thru your options, like Medicaid. Don't bother asking your neighbors how they feel about "welfare medicaid" bc they'd be the first in line applying for it if their home was being destroyed by an Elder w dementia and hoarding disorder!
We all wring our hands over the dreaded day they move into managed care, yet the truth is, they do FINE and we've wrung our hands in vain all that time.
Best of luck to you
Its exhausting for both of you to have your Mom go through that mess. This Is how I did it with my mother …Quickly move her with what she needs . And bring some other things you know she would want , a few framed photos etc . So she has some familiar items in her new surroundings.
Then you go through and throw out the trash. The other stuff that she may ask for , photo albums a few favorite Knick knacks whatever save them in a few boxes . If she asks for an item bring it. Or you can bring one box at a time for her to “ go shopping in .” After the third time my mother didn’t ask for anymore boxes as it was too stressful . If she asks for an item you threw out . Say you are looking for it .
Rely on friends , this site , etc for support . I walked ALOT . It would help the anxiety . There are caregiver support groups however I never found time for that . Try a long hot bath with a bath bomb. Read a good book to escape , even if it’s just 15 minutes a day . Get your hair done , or a massage , Go to dinner with a friend.
It can easily become overwhelming at times.
There are so many emotions involved in caregiving for our parents. I hope there will be brighter days ahead for you.
To answer your question about what you can do to cope, you have already started by reaching out to a support forum.
I also found comfort during my caregiving days by attending an ‘in person’ caregiver support group. We met once a month and some of us went out for coffee after the meeting.
I also met with my therapist which helped me to focus on what was truly important.
Don’t forget about your needs. When you need to walk away for a bit, please do and don’t feel guilty.
The best Thanksgiving dinner when I was caregiving was when I told my brothers and mom that we were going to spend the holiday on the beach in Florida! It was fabulous!
No cooking! No criticism from anyone! We made the holiday all about us that year. We needed time for ourselves and we enjoyed every single moment.
I never dealt with any of the clutter issues. Mother Nature, Katrina destroyed all of my mother’s contents in her house. She had nine feet of water in her home.
I’m not really complaining because I was just so happy to be able to get to mom’s house in time to get her and evacuate to Houston.
My mother was never a pack rat. Neither was my grandmother. My husband’s grandmother was awful. It took my mother in law ages to clean out her house after she died.
I can’t stand clutter. I don’t hold onto anything that I don’t want. It’s amazing what we end up with when we don’t pay attention to what we stick in cabinets, the closets and the attic.
The move is actually going about 5 times as fast as I was afraid it would. Today was just... well, as I said, it was nothing unusual. I think the problem was that when I would have normally stepped away to avoid getting overwhelmed the timing just didn't work out and I couldn't. Tomorrow will be better. And my husband has taken next week off -- she is actually more relaxed around him and he can get a lot more done in a shorter period of time than I can. Our hope (including Mom's hope) is that she'll be spending most of her time at the apartment by this weekend and leaving the cleanup to us.
Thanks again for chiming in. Although the suggestions about moving her to MC or AL immediately do not work for us at this time, the sentiment validates the options I know we have. I honestly think it's something we may be having to face in a few short months, though you never know. Regardless, we have to take care of this first.
Wishing you all a good night.
My Mom had a 4 bedroom farm house. She had 55 yrs of "someone may be able to use that." She went to an AL so only needed the basics. I agree, if Mom is showing signs of Dementia asking her what she wants to take and what not can be overwhelming to her. Just take what you think she needs and get her moved in. Then go back and clean out the house. I would wear a mask, gloves and get disposable coveralls since you will be dealing with feces, urine and roaches. Start with cleaning that stuff and then get rid of trash. Clean out the frig and the food cupboards. Then start on the other stuff. You may need to hire someone to really clean. May have to tear up rugs and get rid of.
I so hope her animal/s are not going with her or you will have tge same problem. If Dementia is involved she can't care for animals.
So far, miraculously, the dog has not had an accident in the new apartment (over the course of 48 hours). Which is weird and amazing. Maybe he just likes it better in the new place?
We will definitely be hiring professional cleaners at some point, though we've been cleaning as we go (especially today).
This. You're moving her to an independent living facility? Who is going to clean it? Does she need help with her personal hygiene? Getting rid of the stuff is only one issue.
Sounds like your mother needs a more intensive level of care. Are you going to be the more intensive level of care?
I'm sorry to say I think it will go with your Mother to her new Independent Living apartment.
But, the upside is it will be a fresh clean start. A tidy home is easier to keep tidy than to tidy up a messy one. And there may be more ability to have cleaning, maintenance & other visiting home services added as part of the new arrangements.
TV is TV but I saw those TV Psychologists on Hoarders try their best to have the person decide on each item themselves, try to grow their skills on decision making, learn to distinguish between useful or not. I didn't notice any improvements really... it just seemed to overwhelm & traumatised them instead. I actually wondered if it would be kinder to move them & their 6 favorite objects to a new place.
I also noticed when the homes were cleaner, they didn't fall in a heap wishing they still had this or that. It appeared to be out of sight - out of mind! Like how very young children are - permanence placement memory or something?
I truly hope this onerous task can soon be done.
I would take Barb's advice too. Move your Mom. Then go clean up.
For de-stressing, rest your eyes, hands & mind. They have done enough all day.
Just use your ears & listen to music at the end of every day.
Peace to you.
- create a visual “calm” space for yourself. As we’re approaching Spring, I’d do it outside with a table and chair that you can go to to sit and chill. Scroll your iPad or phone and remove yourself physically and visually from the clusterF your parents created in your once lovely home.
- do a playlist of music you love and have it going while your at the home, aloud if you can or earbuds if you can’t. Then blast in the car when you leave….. mine was the music from GoodFellas, via SoundCloud & Spotify as I wanted all the songs. If you don’t know how to do this, ask your kid or grand kids as they can do it in……10..9..8..7..6 here ya go grandma it’s on your phone in seconds!
You & your hubs have gone above and beyond the pale to do for them and unfortunately they / now just mom are a combo of unappreciative and do not understand the seriousness of their predicament. Ya can’t change it.
I have a ?, has your mom already moved to the IL? & if so, how is it going?
or
is all this being done to get her ready for the move? Was any type of “needs assessment” done prior? Did IL require mom to do a “play date” or a luncheon & activities session at the IL before allowing her to become a future resident? Or did you just tour the IL then did a deposit all on your own?
Also please pls realize that the reality shows - like all other filming - have folks (crew) working in art, set and property departments that do add, move or reposition items for dramatic effect. Lots of smoke & mirrors.
She has been great about just letting my husband and I do what we need to do with everything left in the house, which is the vast majority of her possessions. Our plan is to stage a room as a "boutique" for her to select some things from, rather than asking her to stand by and direct us or asking her about every item as we go through things.
She has not been assessed for dementia or for other causes behind her cognitive symptoms. She claims she's spoken to her doctor about it more than once and even asked specifically for a referral to a neurologist for further testing -- but the neurologist is not seeing Medicare patients, as it turns out. Other senior programs for testing here and in Houston currently have waiting lists. I very much wish she would switch primary care physicians but she refuses to do so.
Meanwhile, she's handling this very well so far. I'm sure we'll continue to struggle on some days as we prepare to get rid of things -- but it's honestly going so much better than it has in years. And she does seem very relaxed and comfortable in her new place (thank goodness).
One last thing -- for those who mentioned that in their experience, out of sight is out of mind... yep. We've noticed that, too. We're also employing the, "Can I have that?" approach if she's unsure about something. It's reassuring to her to think I'll take something, and then I can do what I wish with it. But that's happened only a couple of times and only with very small things.
.Like the boutique idea !!
Something that might help though....
Was dad a Veteran? If so there is a possibility that mom might be eligible for some help from the VA. Contact your local Veterans Assistance Commission or your (State) Department of Veterans' Affairs or you can contact the VA. They can help determine if your mom can get some help.
Hoarding is a mental illness that gets worse with dementia and depression. Your Mom needs to be evaluated to understand what she's suffering from. Your Mom nay certainly be going through depression from your Dad's passing. Finding her a therapist that works with geriatric patients to help her with hoarding is a good start. Even finding a social worker or a church group for grifef conseling would benefit her. Change is hard.
While easier said than done, I think you have to start throwing things away that are no longer used or needed by your Mom. The general rule for decluttering is if you haven't used an itemfor year, get rid of it.
While Mom doesn't want to change her primary care physician, it's necessary because she's not getting what she needs. Her primary needs to be specialized in geriatrics to help navigate from experience what she's going through. You also may need to search individual hospitals to locate a neurologist who takes Medicade or Medicare. Are you Mom's medical POA? If so, it depends on you to do this because she is not helping herself to do what she needs.
You mentioned IL and TX. Do you and Mom live in different states, the same state? I live in IL and am happy to help you locate resources to help your Mom as I've gone through this with my Dad who has dementia.
I wish you both the very best.
I give you a lot of credit for taking such good care of her. I hope you have thanked your husband for his support. This must be wearing thin on him also, she’s not his mother.
--encourage mint
🌿
I recently moved my sister with Alzheimers across country to an independent living in a community near me but she will need more care soon.
The move was huge and discombobulating for her; she is still recovering. I spend a lot of time with her ensuring she's safe, eating ok, bathing, etc. as much as I can. Beside the clearing out of unending STUFF!
On the days I get overwhelmed and discouraged, I remember three things:
1. I try to live in her reality and not try to make her live in mine.
I.e. distract her when things are not going her way, agree with her view of things (as much as safely possible) NEVER ask if she remembers any thing, because she doesn't unless prompted, and try to engage her in simple things like going for long drives, fun movies, putting a puzzle together, etc. We went to visit my parents grave the other day! She just got a digital picture frame (AURA from Amazon) that friends and family can send pictures to and she/we love sitting and reminiscing.
2. If today is the last time I ever see her, how do I want to remember her/our time together this day?
3. Done is better than perfect.
You are at the beginning of your journey and that part is really hard until you get her settled. It will get better and remind yourself of that, and give yourself a big hug for all you do. She is lucky to have you!
I especially love how much of a realist that you are.
You are very wise.
And you are grieving many areas.
1 Your parents decline
2your parent passing
3the way your parents disregarded the house
4the time and energy you are giving to sort and giving her dignity to choose when she can be uncooperative
You are correct it is hard.
Can you take a day off and do something nice for yourself?
Can you order in a nice meal ?
You have been pouring yourself out. And it is hard- others don’t see it. You are a hero and no one recognizes those heroes.
I know tomorrow is a new day. Some days you have the energy and other days it is a mountain in front of you.
please do some things for yourself . Feel free to not ask mon approval on every item you sort. Let her nap and you get 3 boxes yourself with your executive decision to pitch.
sending love and praying
If that does not work you can always come here to Aging Care.com. Hope you find someone or a group that you can relate to, almost forgot to mention check out You Tube for videos, especially Careblazers with Dr. Nataldi, she does video and live classes and chats. Wishing the best for you and your mom.
You are doing what you can now.
I edited this list below. Most of us 'know what to do' and it is a matter of deciding to do it, through feelings of depression, overwhelm, exhaustion, responsibility (that seems to never end). It is not easy although it is necessary for our own well-being. This is a good list to print out as a daily reminder.
What causes emotional exhaustion? (Oh... we know)
Experiencing some daily stress and anxiety is normal, but over time, chronic stress can take a toll on the body. Emotional exhaustion is caused by a long period of constant life stress, whether from personal stress at home or stress related to work.
What triggers emotional exhaustion differs from person to person. What might be stressful for one person could be more manageable for another person.
How to treat emotional exhaustion___________________
You can make certain lifestyle changes to help alleviate symptoms of emotional exhaustion. These techniques won’t be easy to carry out at first, but they’ll get easier as you begin to form healthier habits.
Making small changes in your daily habits can help manage your symptoms and prevent emotional burnout.
Once you recognize the signs of emotional exhaustion, try the following:
Eat healthy______________
Eating healthy means choosing a balanced diet rich in fruits, vegetables, whole grains, and lean meats, while avoiding sugary snacks and fried or processed foods.
We’re told to eat healthy all the time, but it can make a world of difference when you’re stressed. Not only will it help you get the vitamins and minerals you need, but it will also improve digestion, sleep, and energy levels, which can have a domino effect on your emotional state.
Exercise___________________
Any sort of physical activity raises endorphins and serotonin levels. This can improve your emotional state. Exercise also helps take your mind off your problems. Try to exercise for 30 minutes per day, even if it’s just a long walk.
Limit alcohol______________
Alcohol may temporarily boost your mood, but the feeling will quickly wear off, leaving you more anxious and depressed than before. Alcohol also interferes with your sleep.
Get enough sleep______________
Sleep is important for mental health. It’s even more effective if you plan your bedtime for roughly the same time every night. Aim for eight to nine hours of sleep every night. Developing a routine at bedtime can help you relax and ensure better quality sleep. Limiting caffeine can also have a positive impact on your sleep schedule.
Practice mindfulness________________
Mindfulness is a term you probably hear a lot, but mindfulness techniques are much more than just a fad. They’re scientifically recognized to reduce stress and anxiety and can be the key to balancing your emotions.
Mindfulness is the act of engaging with the present moment. This can help direct your attention away from negative thinking. There are many ways to practice mindfulness.
Examples include:
meditation
yoga
breathing exercises
going for a walk, especially in nature
keeping a journal to write down your feelings and thoughts
Researchers recently even found evidence that a single session of mindfulness meditation can help reverse the effects of stress on the body.
Connect with a trusted friend_______________
Talking face to face with a friend is a wonderful way to relieve stress. The person listening doesn’t necessarily have to fix your issues. They can just be a good listener.
And, it is important to see / acknowledge the 'cues' that come up either gradually or quickly and make decisions (boundary setting, getting caregivers/help, counseling). Do not let them pile up. Talk to someone, get support. '
Gena / Touch Matters