My Mom, age 73 is currently living at home with her significant other, age 74 of 20+yrs (I will refer to him as "boyfriend") who has defaultly become Her caretaker 24/7 over the past year due to Her battle with aggressive Alzheimer's disease, and with Her declining abilities to care for Herself in every way, he has now become overwhelmed, and his own health issues are being ignored by him due to this. I am there at least 2 days per week on my days off from work, and can see that his care is not the appropriate care She needs, in ways such as, dietary intake, bathing, smoking habits, changing of medication doses without researching because *HE* feels it helps (scares me to death, and I've lectured him on this), and the lack of interactivity to keeping Her mind exercised. Her incontinence, wandering inside and outside the house day and night, lack of consistent bedtime (2am - 4am) constant questioning of the same question over and over after him answering, and lack of ability to take simple daily care of Herself, is more than he can single handedly handle, and HIS health issue needs are being ignored. He has refused time and time again, my suggestion for respite care, and other care needs for Mom by services available are declined by him due to the fact that he does not want to pay for someone and says: "I got it." Well, he doesn't "Got it", and my Brother and myself (I am Mom's POA) believe it's time for Her to be placed in Memory Long Term Care Facility. We are both agonized by the fact that it has come to this decision, and I am very anxious and frightened for my Mom, as She is aware that She is Home, and has Her comforts there. She does not adapt well to change. ie: When I dust and clean their home while there, I have to move photos & other keepsakes, and She gets very upset and cries thinking that I am taking them away, even after I place them back after cleaning, She thinks I have packed them up, and am taking them from Her. My question is, how in the world are we going to make any transition from Home to a Care Facility?? I know it's never easy for anyone who is in this situation, and expect it to be a terrible experience, especially the moment I have to leave the Facility, and Her behind. She is going to freak out, and so will I for sure. How can this transition be more smoothly than I am expecting?
He "don't got it", that's the problem.
His "wishes and opinions" are very much cared about, due to the fact they are not in the best interest of my Mothers well being.
Also, no, I will not just say, "it's up to him" and I can care less about *my* life improving, it's Hers I'm only concerned with at this point.
There is no common law marriage in the state of Arizona, and even if they were married, of COURSE I'd not only feel, but BE responsible for my Mothers well being.
I do appreciate your input, although it does sound as if you feel I'm being heartless in some way. I am looking out for *his* wellbeing as well. He is in way over his head, and further care is needed than he can provide.
Again, thank you.
Thank you to all other comements as well.
I have gathered much valuable information & resources from all of your responses.
Since he is having health issues would only be curtious to see if could move them together or her close so he can visit often.
Fear of being alone engulf many.
Actually the nursinghomes have to I am found honor right to smoke as well as right to not smoke. A nicotine patch maybe used but assessing amout of tobacco smoked and type is necessary.
You are POA who is Durable and Healthcare surrogate. Who is fuduciary payee for if any gov benefits.
You can apply for longterm care HBHCW and Nursonghome through Dept.Children and Families. She will get case manager for the longterm care they will do assessment. She can go to daycare through neighborly care network meal on wheels this is part of the LTC I mentioned applying for also but do not have to be on LTC.
Her being upset when you clean or move to dust is unfortunately normal.
Thing in their place and stay there.
If move to nsg home.Pictures COPY only . nothing you want to bring back.
Everything counterfit copy you take to nsg home.Esp. rings. Sorry but if you dont want to lose it dont take it. Esp. Memory care. They walk in and out of rooms trying to find theirs pick up what ever. Then there are the ones that collect whatever and hide it. There are some cognitively do it.
Then the workers.
To enact the DPOA need doctor to do can do on visit. And since she is a degenerative life threatening disease.
Skilled care form filled out by Dr. You get from Elder Affairs DCF.
Smoking when have ducks in a row. Take boyfriend aside. If Dr. Orders to stop or documents cut doen. Can NOT SMOKE with Patch. If boyfriend does give her cig after this then he is detriment to her health..... Let him know this. As DPOA enacted by her physicians2 she would be deemed in unhealthy enviroment.
Discuss the other meds with her Dr. If you are DPOA HCS the healthcare surrogate in some states can not be Soc Sec payee. As DNR possible responsibility of HCS. Why I said all ducks in a row.
If you can involve him explain her brain will work better without the nicotine.
But be aware make yourself aware of fact that persons with emphysema often nicotine actully helps them breathe. If med marijuna or essence avail. Investigate this if emphysema a problem. Also is non tobacco herbal mix that actually helps curb desire and ceases desire. Old herbal mix known as Cowboy Smoke, included is roseleaves with rose hips being last herb withdrawn.Sasiates and Ceases desire. I dont know how but it does and from a 55yr smoker who couldnt quit.Hypnosis and all.took lessthan 6 mo. Just quit.
The furniture and arti les baking soad will release the nicotine oils. Can be rubbed on dry and used in cleaning water or with paste let dry rinse off may take couple of times. And old fashioned lysol concentrate (phenyl) or yor favorite scent lavender or lemon having oil release properties also can use for effectived deodorising nicotine stain removal all of above esp baking soda , borax in clothes linens also
Take care nicotine is absorbed through your skin. Wear gloves. Take boyfriend onboard as in her best intrest frequent visitations stimulate memory and he can play bingo etc... which is good for her. He can have a chance to take care of himself since elderly also if he doesnt want to be lonely have him with you check out facilities ALF with skilled care to meet both their needs.
Don't resent him for caring for her in the way that was the norm. for their generation.
Thanksgiving wishes.
You're a good son for being so concerned about your mom and my heart goes out to you and her given her age
May I ask if you are both financial and health care POA? you will need to have both in place
At 73 your mom could live quite awhile longer and so finances are a necessary but unfortunate thing to think about as you consider a care facility
You are close but not yet in a crises where you have to make a split decision - give yourself an outline of everything that needs to be considered and seek guidance from an elder law attorney or geriatric care manager or social worker or your local area agency for aging
Does your mom have a primary care physician or neurologist to ask for advice - she may need to be on meds for anxiety or sleeping if she wanders at night
Visit several care facilities - they come in all sizes - also look into smaller residential home settings which work well for some
Most assisted living / memory care facilities are private pay and can be quite costly so knowing what your options are will help you make a better decision
Don't get taken in by the bells and whistles of the building itself but look for how the residents act - are they awake and tended to or are they sedated
My mom has been in memory care for 10 months - it is not easy - other residents especially men can exhibit scary behavior - she's in a shared room which is $300 a day and I did buy her a full size bed for comfort
Some have tvs in their rooms but don't know how to work the remote
Many have private caregivers including my mom which greatly increases the cost
Once you've narrowed the choices try to visit the facility in the early evening when less staff is around to get a true sense of things
Ask how many CNA staff to residents at day and night - is there a nurse available and when - is there a visiting doctor - who is it? Will you keep your own doctor ?
I've observed folks in their 70s who are quite confused but seem to accept where they are without too much difficulty - others like my mom hate it and want to be home - perhaps it's an age thing - she's 93 and her needs are not the same as a 77 year old
Dementia is not an easy journey but come back here for support and questions - there's a wealth of experience here
Do you have authority to act on mom's behalf regarding her finances? Will she pay privately or apply for Medicaid?
I found that discussing things in advance with a person who has significant dementia is not helpful. Plus, she's not likely to like it in the short term nor remember it later on.
I'd discuss plans with the facility if she tries to wander. Find out what they will do. Has a doctor prescribed Secure care due to her wandering?
I'd check on the facility in advance to see what you need to bring. In the places I found, they provided the bed, chest of drawers, night stand, curtains, etc. You could put your own pictures and decor up though. They also provided sheets, towels and blankets at no extra charge, so basically, you only need her clothes and personal items. I wouldn't take too much. While it depends on the level of dementia, I found that my loved one didn't look at her photos, wall art, animal pictures, etc. nearly as much as I thought he would. It's sad, but, unless someone is there to point to the items, they seemed to go unnoticed.
I'd get her to the facility as calmly and quickly as possible. I'd avoid a big scene with luggage or boxes and them there by another person who can do it behind the scenes.
It is important as mentioned above to have them both get the level of care that they need. I was able to cover all these expenses out of their monthly income and savings until the long term care insurance kicked in. When I get their condo emptied and sold, that money will go in to their savings and be used for the husband's care, now that the wife has passed on. He was sure they could live on their own, but it was impossible. He is still sure he is just fine, but would not survive without the care he is receiving. And he is happy with where he is and the new friends he has made. He tells me he remembers to pray for his wife everyday. I do, too, as she was a remarkable person until her frontal temporal dementia took her life.
1. Going to a geriatric specialist and getting an up to date physical
2. If she can not function on her own, having the geriatric specialist declare her incompetent
3. You doing research to find an appropriate memory care facility (don't tell your mother)
4. Help your mother stop smoking
5. Inform the boyfriend of your plan but he must keep it confidential; work out a mutual plan for his continued involvement (his safety and well-being of living alone, visiting your mom, etc.)
6. Express your concerns to a key individual at the memory care unit as well as your mother's doctor
(In my case, two of her doctors told me that it was time for my mother to go to a memory care unit and I still kept her living with me a few months after their advice until I realized that my family really could not care for her any longer. The marketing director at the memory care unit routinely helps plan for the new resident's arrival - there are staff members assigned to help move in; you can ask for certain furniture that they have available to be placed in the room ahead of time).
Do you have other family members who can help with the transition for your mother?
In my case, one of my brothers came from out of town and took mom for the day while my sister and I brought things mom needed for her "new room" down and decorated. Since my mother has problems with paranoia and people stealing things as well as my mother losing/misplacing things, we decided to bring just a few things: 2 of her favorite German paintings, limited furniture, limited clothing (labled); and new bathroom and bedding to make her room look nice. I was still worried that when my brother brought my mom to the facility later that day, that my mother would not get out of the car. I called the doctor and he increased one of her medications a few days before... and then my brother brought my mother to the facility, she was tired after an outing all day and she needed to use the bathroom. My brother said "this place has a bathroom -let's go in). She came into the lobby and my sister and I greeted her, as well as the marketing director and staff and we walked her down to her new room to use the bathroom. When she saw the room and how nice it looked decorated with a few of her favorite things, my sister told her that this new place was picked out just for her. The doctor was right - she immediately accepted this living arrangement as her new "house". My sister stayed with her to eat dinner and I came the next day. Mom did not even remember that I was there the night before. I attribute the success of this move to many things: prayers and God, advanced planning, the help of my siblings and the staff at memory care facility; the choice of facility (small/clean/wooden floors/tall ceilings/newness/ rooms overlooking a garden area and lake, etc.). It has provided my mother with what she needs and gives my family and me who have cared for her previously the reassurance she is being cared for and our own lives back to an extent.
If we could do it with my mother, anyone can. Good luck!
If you have to step in and move her, I wish you all the best. You don't sound overly enamored of this man, although he has taken on quite a burden. The smoking is a great concern, I personally do not know of a single "smoking allowed" facility at all. Perhaps she can quit if he isn't there to hand her a cigarette. That would be a plus!
I get the cleaning thing--I can barely scrape the dust off mom's aging plants before she accuses me of theft and intrusion. She can't see the dust and it doesn't bother her (but it gives her a hacking cough, nonetheless, so dusting I go!) I also wouldn't take a lot of memorabilia to her new place, if you can make the move. Stuff gets "lost" very easily. A few pictures, nothing of value...and slowly add or take things away to make the place more homelike. You seem to be aware that the nicotine smell may cause some complaints from other residents--maybe no furniture at first? Have it deep cleaned, but that smell lingers forever.
Anyway, I wish you the best. Sounds like the BF has some issues of his own, doesn't he have family? He could just be very lonely. There's a lot of issues at hand here, I wish you the best.
BLarkin, my heart goes out to you. I know that it feels like no one else really understands because your situation is so different from anyone else's. Because it's your own to deal with. Moving my mother was the absolute hardest thing I've ever had to do. Mom's been there a month now and there are more highs than lows but the lows are heartbreaking for her and for me. I know it's for the best but she did get much worse after the move. I hear it can take at least a few months to settle and then I'll still hear complaints. Searching the web on this topic and seeing that wanting to go home, etc. is a normal part of the transition...well, it doesn't make me exactly feel better but it does make me know that this is the norm. Get your mother moved because that, at least, will be a huge weight off your shoulders. A few days in advance I tried to explain the move to my mother which, honestly, was a mistake. I knew that it was doubtful that she would be onboard and it caused her a lot of agitation those few days in advance. I was shaking in my boots on move day but sent Mom out to breakfast and a movie with my husband and I swept in there to meet the movers, pack the things that were going and then head to the new apartment to unpack before Mom arrived. I wanted it to look like home when she got there. But she was still furious. Yet, I know it was the right decision. Tiptoeing around the dementia just wasn't helping either of us. This all being said...your move could go less dramatically than mine. I share my experience only because I hope it may help. I had foot surgery earlier this year and I heard that the recovery was going to horrible. It was much easier than I thought it was going to be. I have no idea what any of those people who shared their experience with me were talking about. That's what I'm wishing for you. Prayers headed your way.
The unfortunate thing about taking items such as furniture & bed comforter and other things of Hers to a Facility, is that they have been & are heavy smokers, and anything in that house is grossly permiated with nicotine & smells to high heaven when removed from the house. Even when taking some mail from their house to mine which may have only been there a day or two, I smell it once it's at my home.
I have thought about these things on wanting I be sure Her things are there for comfort & familiarity, but see it as impossible.
Her smoking is not an issue, as the only reason She really is even still smoking, is because HE hands Her cigarettes when HE thinks She might want one!
This action frustrate the life out of me!!
He is a VERY routine driven man, and She has become his puppet in his routine. It's terrible, and Very unhealthy for my Mother. (not just the smoking)
She is so sweet & child like, I feel that She will adapt well, and quickly as well, as She will enjoy the activities they will have in the facility, because She like to try new things so that She can impress those who are watching & assisting Her. She is always conscious of & asks; "Did I do good today? I did good today, didn't I?" God I'm crying while I'm writing that... I feel SO bad for Her, I cannot imagine what's going thru Her mind during all this change in Her mental capabilities. :(
Maybe in the back of his mind he will be relieved as he must be so exhausted. You mentioned he would say "I got it"... reminds me of my Dad saying "we will manage" when I knew they needed to get out of that house, a lot of stairs and being 90+ years old does not mix well.
Try explaining to boyfriend that your Mom will probably feel a lot better living in Memory Care, and wouldn't he want her to live each day to the fullest? If boyfriend has money, maybe he can move to Independent Living in the same complex, that way he can stay with her during the day, or even overnight depending if that is allowed.
Try to set up Mom's bedroom at Assisted Living the same as she has at home. I did that for my Dad, so when he awoke in the middle of the night, he saw his highboy dresser to the left of his bed, where it has been in his previous house.
It sometimes helps a little to have familiar things already moved into her room before she arrives. Photos and keepsakes and good. Also, this is not the time to get a lovely new comforter or chair or lamp. To the extent possible bring things from her home that will be familiar to her. Obviously this isn't going to eliminate all discomfort with change, but it may help some.
Does her boyfriend drive? Is the place you have in mind close enough so that he can be there often? If he can be convinced to not bring up topics that will upset her, that might also be a great comfort to her.
Her dementia cannot be cured but her symptoms may improve some once she is getting her medications on time, eating regularly, kept dry and clean, etc That will make all this anxiety worthwhile.
It would be ideal if her boyfriend could be on board with this, to help with the transition. I hope the lawyer can convince him that separating their finances is for his benefit, to protect him from Medicaid insisting that all the joint assets are Mothers. And that the move is not to separate them and that he can spend as much time with her as he wants, but he just won't need to do the hands-on tasks.
It used to bother my sisters and I when our mom mentioned going home. "Well, if you are leaving now, how am I going to get home?" But it gradually dawned on us that she accepted the nursing home as her home more quickly than we expected. She was only confused about how she was going to get to her room! Then our answer became "Mom, all the helpers here know exactly where you live and anyone who is handy will push your wheelchair back to your room when you are done here."
Yes, the transition will be hard on everyone. But you might be surprised at how quickly your mother may settle in.-