Moving Mom in with me. Any suggestions?

MyBestFriend

My mom has been in the MC unit of a beautiful Senior Care facility for 2.5 years.  Her dementia has increased dramatically, and I wish we could keep her there.  Unfortunately the facility is very expensive and we no longer can afford to keep her there.  After much thought, prayer, and discussion with my brothers, I have decided to bring her home to live with me.  I live in a mobile home, and we will be in close quarters, but we'll do fine with it.  Mom knows who I am 90% of the time, but she often forgets my brothers.  She is usually quiet, but she gets fixated on things (like a chip in her nail polish) or the exact placement of something on the dining room table.  In fact, she exhibits pretty much all of the standard behaviors of someone in the mid to latter mid stages of dementi.  She us having difficulty finding words, cannot initiate activities, but she will follow instructions perfectly.  She has not been combative, nor does she wander. I provided some background info because I want to ask a question directed to those who have or are caring for someone with mid stage dementia in your home.  What do you wish someone had told you before you began this journey with your loved one? I know that there will be many challenges along the way, but I'm interested in knowing what you learned that might help me as I begin this new season with mom.  Thank you all for being here.

abc123

Do you have a husband and or children/grandchildren to consider?

It is possible that she could become combative any day, also start to wander at any time. Just remember this is a progressive disease, she will only get worse. Keeping up with hygiene and incontinence issues is hard, very hard.

Good luck.

Tfreedz

What a sweet thing you are thinking of doing for your mom! 

My husband and I brought my mom who is midstage dementia into our home 3 months ago after her diagnosis at the hospital. What I wish I would’ve known was the lack of freedom it would bring our family! Mom is sweet, not a wanderer but not safe to be left home alone. I must order groceries online or wait for my husband to come home from work before I can run any errands. I would highly suggest you have respite caregivers lined up before she moves in so you will be able to take some breaks from caregiving. We eventually found a reliable companion to come 2X a week for 2hrs., that still isn’t enough! If your area provides adult day programs (our area is on hold due to covid) consider that for your mom during the day.

Although my mom had been to my home tons in the past, she was extremely lost. We had to label all doors and directions, she would go towards the outside door, thinking it led to her room. We also had to install many locks for her safety. My mom would try to medicate herself more than once a day because she didn’t realize she already took her meds even though we had a dated pill box, medicine cabinet had to be locked. Mom also started taking things thinking they were hers, mostly my hygiene items. I now keep our bedroom locked as well. Another consideration is how well she sleeps. My mom was pacing and awake all night, which kept our family up all night as well. The doc did prescribe remron which seems to help. I also gave her a rocking chair in her room which she says she rocks in when she can’t sleep. Also, make sure you have plenty for her to do...adult activity, coloring books,jigsaw puzzles,clothes to fold,easy organization tasks.

Ideally, we would like to move mom to a MC but she is only 70 and we are worried we will be in the same position as you are in a few years. Please keep us posted on how it goes and good luck!

MyBestFriend

Thanks to both who have answered.  My husband died over 6 years ago.  I have one grown son who is not interested in helping.  I have two brothers nearby.  One will be more help than the other, but I'm going to be the primary caregiver.  I have already begun looking for someone to come infor two to fours hours a week to start.  My one brother has said that as long as I can give him a bit of notice, he will be able to cover for me if I have a doctor appointment formyswlf.  The other brother has suggested that I hire help as needed.  They are both giving what they are able to give.  I have some coloring books,  a songbook, a small beach ball for indoor exercise, etc.  Fortunately I won't be affecting anyone else's  life in taking mom in except mine and her's.

​fesk

Enjoy all the moments with her while you still can. Even though you may not need to address certain things now, try to prepare for them ahead of time as things can change suddenly or unexpectedly. It is heartbreaking to live with and see the small losses continuously. It is much different than just knowing - make sure you have emotional support. Do not count on help from others - it will be great if you are fortunate enough to have that - but be prepared to go it alone. Do try to arrange for caregivers right away to allow your mom to have a companion and yourself to continue to live your life. It is not easy to find good caregivers so you may need to try many before you find the right fit. You will need more patience than you can imagine. Do what you think is best and try not to let others make you doubt yourself. It has become more challenging in every way as the years have gone by but I do not regret my decision to do this.

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PickledCondiment

Proceed with caution, your intensions are honorable but I see a number of issues that must be addressed before she leaves the facility.  Have you gotten financial and medical paperwork in order?  Who is her financial and medical POA (Power of Attorney), what assets does she have (bank account, real estate) etc. Who will be responsible for her getting her to medical appointments, getting her hair cut, groceries, etc. 

If the legal documents are not in place (and current) a meeting with a certified elder lawyer is required.  Your family must know exactly the status of the finances, any assets, etc before she leaves the current facility. The elder lawyer will be able to advise on Medicaid, other programs you may need to utilize.  You want that information now, not when you have a crisis.

Everyone must also know and agree to what roles they are doing to play and what are the expectations. What are your brothers specifically going to do, how will they contribute? Extremely easy to say 'we'll help with mom's care', getting those people to actually step up is another matter entirely.  Are you capable, willing to confront sibs who don't do their part?  Are you willing to make hard decisions alone if no one will step up?

Is your mother prepared to leave her 'beautiful' facility and live in a crowded mobile home?  That may be an adjustment she isn't capable of making.  (You may find the crowding is mentally and physically taxing. Consulting with her medical team about this move is necessary. 

Do you work outside? Do you have any pets?

Caring for my mother has taken (and continues to take) a toll on me mentally and physically that I was not prepared for. 

Cynbar

Have you considered qualifying her for Medicaid? You will need to have a Plan B, even if you do take her to your home, in case you can't continue to care for her for whatever reason. Some people don't think of Medicaid, they just think they have to take their LO home when the money runs low. It sounds like she has done well in her current facility, have you thought of moving her to another place (if her current facility doesn't take Medicaid)? It will be an adjustment for her to leave the structure she is accustomed to and go to a home situation, and then might be another adjustment down the road if she needs more care than you can provide. Change is hard, but it might be easier for her to change facilities than get used to a totally different living situation in your home. Just a thought, but sometimes we make decisions based on our own projected ideas and not on what is best for our LO.

mommyandme (m&m)

I wish I would have known of the deep depression that can come with this job. I can see there will be lots to get thru even after my mom has passed on. 

Also, wish the steep learning curve could have given me a break and shown me the patience I’d need when I see a new issue. Thinking that she was just being stubborn instead of actually unable to carry out a task that she could do yesterday. I’m now the most patient person I know, if only I could have known then. Maybe the things I’ll have to work thru when she’s gone wouldn’t be so many. 

 Hoping for peace and comfort for you and yours.  

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Sball

Ditto to the honorable and admirable.  It is a tough job.  My mom moved in with me about 7 years ago.  She is now late middle or early late stage.  Freedom is lost as disease progress.  I can longer travel for respite without taking her with me or find a 24/7 caregiver.  COVID certainly robs respite.

Is the place suitable or ABA?  Someday walker or wheel chair will be needed.  If any renovation is needed, consider modifying prior to her moving in.  Having contractor in the house will be difficult for all parties.  So is new environment after the changes. 

Can shower accommodate 2 people (she will need bathing assistance)?  Does bathroom have grab bars, seat and hand-sprayer?  Is there space around toilet to allow for modification when she needs it?

Can door leading to exterior accommodate a chain latch?  My mother is not a wander risk.  In-fact she is afraid to leave the house due to fear of getting lost.  For a short period of time, she hallucinated someone is at the door and try to get out.  The chain latch with carabiner clip to shorten the chain does the trick to keep her safe (and I can use the bathroom or sleep in peace)

Sball

Neglect to mention... child lock on cabinets and locks on doors/ closets for keeping LO from rearranging things. 

Create a hotel like binder (Caregiver's notebook) containing all key info (POA, DNR, medical insurance, medication and associated scheduled, doctor's visit summary, history of medications used and negative reactions/ side effects, her likes and dislikes, favorite food, emergency contacts). 

live in daughter

Hi My Best Friend, we moved our Mom out of AL after only 3 weeks and back into her apartment. My two sisters and I took care of her 24/7 for almost five years. We each took a week living with her.

Here are some things that we found- look into getting someone to come in to help you with your Mom. You decide what you may need help with-companionship, cleaning, helping with physical cares for your Mom. The lesson we learned was if you are working with an agency do not sign a contract. We signed a six month contract- paid up front- and the agency workers did not work out. My Mom would not allow them in her apartment. The agency sent many but never coached their caregivers on how to work with a person with dementia. They would not refund the money. We went with another agency who only charged by visit.

As time goes on our Mom became less and less mobile. She used a walker but gradually became unable to walk. We invested in a recliner which also was able to raise my Mom into a near standing position. This was a great help. As my Mom gradually stopped walking we needed a wheel chair to get her from bed, chair, commode, etc. Going to a wheel chair required us to think more about where we could take her. A ramp was a good investment for us.

These are just a few things that we experienced with our Mom. The biggest lesson we learned was probably to go with the flow. Some days are going to go fine. Some days will not be fine at all. We always tried to find triggers to our Mom's agitation and alter the environment to promote more of a calming atmosphere. Sometimes we were successful and sometimes not. We always kept trying and listening to others. 

The other big lesson we learned was to keep in touch with your health care team. They can assist with medications and other services that will assist you and your Mom on our journey.

Hope this helps.

Brigv

 

 

It is no doubt sweat of you to make this decision. But I agree with other members that keeping up with hygiene and incontinence issues is very hard. Your everyday routine will change completely. We tried to cope with everything by ourrselves, but it is difficult to combine everything, especially if you have children. So, we hired a sitter who comes three times per week (plus additional days if needed). I should say, I found her pretty fast on care com. You can contact the service via the care com customer service https://care-com.pissedconsumer.com/customer-service.html  Also, don't forget about your own health. You also need time for rest. With the sitter, I now have much more free time for myself and my children.

 

 

fav-dil

The amount of care needed will increase exponentially as the disease progresses to the point where it's way too much for just one person (practically, physically and emotionally). I wish someone had helped me understand how entirely consuming being a care partner/giver would become at the expense of your own needs and those of our own family and that regardless of good intention,  compassion, and love, even with both my husband and I as my MIL's primary caregivers, it's not enough and we just don't have the skills, time, training, patience or know-how for what she really needs.

Gig Harbor

I would suggest getting her qualified for Medicaid if she is out of money and get her name on many lists for a Medicaid bed. Does the facility she is in have any Medicaid beds at all? Are there any other facilities that she could afford? I looked at one for my husband the other day because within the next year he will need care. It was a little run down but the staff and care seemed very good. I know he would not notice the fixtures or decorating at all so it would be for my pleasure. I will have to not feel guilty not choosing the newest fancy facility.

MyBestFriend

Thanks to all of you who responded to my post.  You have me things to consider and a lot of helpful advice.  I appreciate you all. I am looking forward to having mom here with me, and I'm investigating some in-home caregiver options as well.  I'll continue to read the posts in the forums as I'm learning a LOT. Happy Holidays to all of you.

Isabelle95

My hubby is in a small, licensed care home and is in the late stages of Alzheimer's, but I do have a suggestion that may prove to be helpful for your situation as things go on.  At the outset, our family doctor urged me to contact Hospice to see what they offer. I thought that Hospice only helped when the patient was close to the end, but that is not necessarily all they do. After the first six months, the patient can be re-certified for a couple of months at a time if they meet certain criteria. Even if they are discharged from Hospice for a while, there is a geriatric program under the same "umbrella" that can help immensely with home care. My hubby has been re-certified a couple of times. A CNA comes twice a week and gives him a shower. He gets a visit by a nurse once a week. They provide any prescriptions needed as well as disposable underwear. Their social worker helps the family with problems that may arise. They saw to it that we got a wheelchair when it was needed. If the patient is under Medicare, these things will be covered. At least, talk to the Hospice people in your area so that you know what help is available in the future. Things progressed to "late stage" very rapidly in our situation. I am 83 and have heart issues, so I can't even attempt caring for him at home, but even at the care home, Hospice has been a huge help.