My sister and I used to always joke that if mom were in a home, we would be getting calls, saying we had to take her out!! She went through a period a couple years ago of being very angry, even with her doctor. The nurse would call me to say she was bugging them too much!! I know....because she would do the same to me!!
Now, she is living in her own room, next to a full bath. She has an electric recliner which she loves. My BIL is a gourmet cook, so she gets fabulous lunches and dinners. He will leave something if he isn't home at meal times. She has gained 20 pounds--but she wasn't big to begin with, so that's ok. Yesterday, she said that she thinks they like her living with them, as it has enhanced their lives. She said their lives were boring before. Now BIL has someone to cook for besides his wife!! How funny is that? That isn't the first time she has said that.
They come and go as they please. If she falls, I live close by. Even at the nursing home, she fell and didn't think to press the call button. Most other times, she refused to wear it. The only time she would see as assistant, was at pill times, or when someone would take her meal orders. Otherwise, she was alone. That is exactly how it was with my father in law. He lived in a beautiful facility and had a kitchen much nicer than mine. But, he was so unhappy. He didn't know how to use the TV remote and they didn't even help him!!
Mom just called. She is so happy. When she lived at home, for years and years she would call me, saying she wanted to die. Now, she says she wants to live. She loves living with my sister and BIL and they are good to her. My sister went through a period of being overwhelmed having her mother living with her. My sister WANTED mom to live with them, but of course didn't realize how it would affect her privacy. After 8 months, she is more used to it and knows mom isn't going to live forever with her. Of course she resented me because my life was normal, even though it was her and BIL's idea for mom to move in. They both understand it is a privilege to care for a parent in their old age, if you are able to. In many cases of course it's not---probably in most cases. And, after a trial run in AL, we know mom probably could accept living in one, when she isn't able to be left alone.
Finally, life is good. But, I know it could change in a hot minute! I am very lucky and extremely grateful each day!!
My concern is for your sister. It is not an easy task to take on the care responsibilities of someone with dementia. It is not just another person in the house. It is a person that has lost their ability to reason, make decision , use good judgement, and understand what is going on around them. It is like living with Dr Jekyll and Mr Hyde! You never know what you will face around the corner. Will it be Miss Sunshine or the big bad grouch?! The stress is tremendous. On top of that it will not get better... it will only get worse. It will go from all day to all day and all night. Even when Mom is happy, it is a constant struggle to entertain her and to keep her out of mischievous. One minute they are right there and the next you are frantically looking for them. Not to mention the constant worry of falls, elopement, or medical crisis. My concern is for your sister. Mom is happy because she has constant attention and you are happy because it is not you giving that constant attention. Having been in your sister's shoes I have to empathize with her. You say it will not last forever.... my Mom lasted 6 years and I can tell you it seemed like forever.
What you described is the very reason I do not tend to recommend placement for mid to late stage dementia in the general AL population. I know there are some that will take them but it is not in the resident's best interest. The nature of the disease causes them to self isolate, stay in their room, and not participate. The staffing is not adequate to intercede on a constant basis. They are set up for those that need minimal assistance.
I placed both of my parents in a locked dementia unit. They are usually small communities of 20 to 25 residents with staffing of 4 or 5 residents to one staff member. This allows for much more one on one interaction with the residents. Instead of staying in their bedrooms they are encouraged to get out into the community commons areas for the needed socialization. My Mom and Dad hated sitting in their room in AL... but they LOVED the active locked dementia unit. Proper placement is so very important.
So I have been where you sister is, I have had my parents in AL, and I ended up with the locked unit option which served me well for 4 years. Believe me, four years seems like forever
To be honest, they all want to stay at home - your home or her home. Staying with family is a plus for sure. Familair people and etc. Note that a demented person would not know what is bothering BIL or Sister and she would say they enjoy her stay without seeing the burden or trouble. But Sister is willing, so it is good.
She can hire a part-time helper to clean the house and watch Mom overnight. Please use home care agency to get help. Sister and BIL cannot do it all alone 24/7.
However, at some point later on, Mom will be harder to be cared for. They will have to deal with her 24/7 one day and she may not sleep overnigt! One day she will have strange behaviors and you will have harder time to keep up with her. This is when a locked demented unit is required. AL is not necessary if home care is excellent. In our case, the home care expenses for 24/7 was more than a nursing home.
Just be prepared.
I know you are sympathetic to my sister, because you have been in the same situation. From what you have described previously (months ago), your situation was much more unbearable. Mom has been much more complacent since living with my sister. It's like she is smart enough to know to not push her buttons, or she will not have a place to live. Mom says often how grateful she is to be able to live there and for both her daughters. She knows I am the one who handles all the financial stuff, including her home. I check on it every day. From day one, I have talked with BIL about the stress on my sister. He insisted everything there was great---that the only bad was when my sister and I would fight, because mom would catch her on the computer. He insisted everything was good and mom was cooperative. My sister told me mom has been nice. When the time comes to put mom somewhere, we will all make that decision. After 8 months, things seem calm everytime I talk to mom or go there. When she starts being more difficult, she will have to go. I do understand where you are coming from, but it's not bad---yet!!
Last edited by Administrator; 01-06-2013 at 09:47 AM.
Bless you and your sister, this is a hard road to travel. Keeping mom at home seems to be working for your sister. I think as long as you and your sister keep the communications open between you that would be great. Be ready to give sister a day off now and then, ideally at least twice a week, even if sister wants to go shopping, right now there are no problems but if they crop up be ready to help sister. Another nice thing for sister would be to treat them both, BIL and sister , to a night out..make sure sister realizes how much you appreciate what she is doing, yes I know it was her choice but still it is a brave one so make sure she knows how much you support her. That was one of the things that got to me, the feeling that I had made it easy for all the rest of my siblings and so they just didn't really help.. I still feel hurt sometimes thinking back on those times when I could have really had some time to my self. Both of you are loving daughters and mom should be really proud of you.
Mom mostly stays in her recliner. She doesn't like to move around too much!! My sister and BIL go out during the day and evenings. Mom is able to be left alone. They also have a baby monitor in her room. Mom doesn't have typical Alz yet. Mostly, her short term memory is shot.
When she can't be left alone, I will suggest we find a place for mom. I would not expect their lives to be disrupted anymore. I know they wouldn't want strangers in their home. Also, we still have mom's home, so caregivers going there is still an option.
Yes Linda, I have been in your sister's position. OH Mom just has some memory issues. That is so far from reality. Lack of judgement and poor decision making along with behavioral issues, withdrawal, and so many other cognitive declines come along with that. Mom stays in her recliner all day. Is that self isolation truly good for Mom? She needs the appropriate socialization and stimulation. Mom can stay home by herself. She likes to stay in her chair. That's well and good until the first time she gets up, walks out of the house, and you get to panic for a few hours before you find out where she is. It happens frequently. My Dad did just that, arthritic knees, bad back, love of his chair, heart complications and all. Everybody was sure he would not go anywhere... but he did.
Yes, I have spent the last 6 years totally immersed in caring for my parents. I know what it takes away. Even if you are not there every minute, the minutes you are away you worry. I was aware but yet not totally aware of just what it was taking away from me and out of me until Mom passed away last Monday. You get so immersed that it's ok. One more day, tomorrow will be better, it is going to be ok after this crisis are all things I have said to myself. Reality is... it only gets worse and more consuming.
Yes, I do worry about your sister. Change is monumental and taking a different direction with Mom is a huge change. More likely than not we tend to keep going with the status quo. Know I am not arguing with your current decision, just trying to make you aware of the long term consequences. Sister took in Mom short term. She had no idea the enormity of the situation. She was angry enough not to speak to you. At this point she has somewhat adjusted to what is now. But there is that underlying resentment that she is stuck. For how long... there is no end in sight. Even an "easy" Alzheimer's loved one is difficult to care for on a daily basis.
Just talk to your sister about HER feelings. Let her know that you are there to support her in any way she might need. And please let her know that when she feels overwhelmed that you are not going to resist changes that need to be made. What I have learned in my journey is... there are more than just the one victim of this disease. It is not only the loved one with the disease that has to be considered. Every person who has constant contact with the person with Alzheimer's has to be considered... especially the direct care giver. If sister's focus is on Mom... then your focus needs to be on your sister and her well being.
Deb once again you nailed it. I don't think any of us who took the role of caretaker knew how much of our lives were going to be placed on hold. Most everything we did we did with or for our loved ones. We ate, breathed and worried. We did the dr.s appointments, we researched other avenues when the dr's could not help, we spent hours massaging, reading , feeding,bathing and so much more. I think at the start it was easy and then it kind of sucks you in and you just don't realize how much you depend on being depended on...it is somewhat like a mission. You get totally focused on your loved one.
Your sis needs to have someone worry and support her. To make sure that when it does come down to the point that sis gets overwhelmed that you have a plan in place. Everyone of our loved ones with Alzheimer traveled this road at a different pace. I was 6 years with my mom before we could no longer care for her ourselves. Alzheimer affects different people differently, that is about the most consistent thing I can say about this disease.
Mom stays in her recliner because she doesn't want to leave it!! When she lived at home, she would lay in bed all day---or go between the couch and the bed. Then, she did get out to play bridge once a week. My sister does not think she is capable of playing bridge now, and I'd have to agree. Mom doesn't even want to watch TV in the family room with them. I can't get her to go to a restaurant anymore!! She has trouble walking and refused to use a walker. A cane really doesn't help. When she was in the nursing home, she was perfectly content to sit in that same chair.(BIL brought it there!!)IMHO, I think it's a walking issue, but I cannot make her use the walker.
You have to remember that caring for Mom is sister's livelihood. When she became angry 8 months ago, I repeatedly told her to talk it over with her husband, because he would have something to say about that income being gone!! She quit her job to care for mom. She hated her boss immensely---so she probably figured it was a better deal to get paid even more to care for mom.
I know it's hard to believe, but mom IS happy. I know because she used to practically tell me daily she wanted to die. Now, she wants to live!! I think it would be different if sister and BIL had jobs. They are home during the day for the most part. They pop in to see her and share meals with her.
Linda, from what you have said so far your Mom is probably unable to play bridge. My Mom lost that ability a couple of years before her diagnosis. Bridge take a lot of short term memory to remember what is played and what is bet. Short term memory goes early in Alzheimer's. There is also the sequencing of the cards that is probably difficult for your Mom. When something become difficult they would rather just avoid it than be embarrassed.
TV is another activity that takes concentration, remembering, and following events. Mom and Dad both lost interest in TV except for the news and Dad's cartoons. The problem with the news is that Dad thought it was happening here and now. No matter what it was!! He would jump up and prepare for that storm (which had already occurred) Beyond that, one with dementia can not focus on more than one thing at a time. I family is talking and the movie is playing it is overwhelming.
Using a walker is new. That does not exist in the long term memory. Learning takes short term memory and you know the problem there So Mom will probably go from walking to a wheel chair and bypass the walker. Beyond that, using a walker improperly is more dangerous than not using one at all. They become a fall risk in and of themselves.
It is not hard to believe Mom is content Many with Alzheimer's are happy. Many are not. I am thrilled that your Mom is happy. But do not become too complacent. Dad was usually happy (unless Mom was annoying him) and he loved his chair but he did get up and walk out of the house! You never know when that random thought will get stuck in her head and she will have to go somewhere.
I do worry about the isolation. If Mom doesn't have any stimulation and socialization she is going to become more and more withdrawn. She needs to use her language abilities and the cognitive abilities she has left. It would be nice if she could help with family activities. Setting the table or folding clothes will keep her connected. One on one conversation is always good as is music. I read to Mom often. She just liked to hear my voice. We sat and looked at old pictures as well as memorabilia from her past. Anything that you or your sister can do to connect with Mom is a benefit.
I had to shake my head. I do not know of a harder job than caring for a loved one with dementia. Oh for the simple days of an 8 to 5 job. Even if sister is being paid... it is still overwhelming and at times frustrating so keep your eyes on sis!
In a way, a dementia unit may provide activities and friends and etc. However, in the end, sometimes the resident doesn't want it anymore. I admit an NH has its plus. But it is not personal and the family still can miss something here and there and cannot be with the elderly like their own home. My late FIL probably accepted it as his "work" place and started eating with them in the cafe in the NH instead of stopping eating back home. Yet, later on when he got sicker and was in the wheelchair and could not talk, he was more remote and less social anyway. I understand it was the severe stage that did it. I still wish he had a big family and that we could be closer to him in the same town and etc.
I am not sure the NH really solves the issues of being social unless the resident likes to socialize. My late FIL didn't really like it. He always closed his eyes on some activities.
When we could not handle home care anymore, we sent him to the NH to be closer to us but I have to say home care was more personal and cozy. NH is the last resort.
I think it usually depend on your family strength and some other aspect, that whether to live with family or at a assisted living home. As some time a family member mightr not have enough time to takecar of their elders due to his/her job and other routine works. Which could make them think about admitting the elders in an assisted living facility.
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Strip is exactly right. It does depend on the family dynamics and the person being cared for. There are some situations where the person with dementia can be kept at home the entire time but it is not easy. It does take cooperation of other family members or at least a plan for care giver time off. It takes the right person to take on that kind of long term responsibility because you do have to put your own life on hold for the duration of the illness. The person with the disease is easier to keep at home if they are cooperative and physically able to assist.
Most admissions to care facilities are for behavioral problems, elopement risk, or inability to assist in activities of daily living (ADLs). When the needs of the person with dementia overwhelms the ability of the care giver to give good care.
So you need to make a realistic assessment of not only the needs of the person with dementia, but the ability of the family to meet those needs. Remember it is not your responsibility to give all the care yourself. It is your responsibility to make sure the person with dementia gets good care. Taking a family member with dementia out of their home and/or taking the care away are difficult decision but ones that every family have to make eventually. Making them at the right time (soon enough) is important