Mom and I moved into in a too small house in a small town two years ago. There's nothing to do here. Big city is an hour away. I'm trying to decide whether to move to a bigger house in the big city so we can have things to do. We drive there for doctors and Sunday church, but that's it. Here we have a cousin who takes mom to the big city once a week and stops by sometimes. What is best for mom - sitting in a small house or getting visual and other stimulation in a big city. She's probably the mid-stage. Memory loss, argumentative sometimes, but doing well. No other relatives.
I'm torn about what to do. Thank you for your advise.
Since your Mom has dementia as you mentioned, you need to consider that she will not be independent enough to be on her own. So a small house or big house is not that relevant except that it is the money issue. One day she will need a part-time caregiver. As long as the house has enough space for a caregiver to help out, the size doesn't matter. Certainly there may be more caregivers in the big city but many caregivers or home health care nurses are willing to drive. One hour may be a little far (30 minutes or 40 minutes may be easier for caregivers to come.)
Frankly for a demented person, the smaller the house, the easier for her to get adapted. But moving too many times also confuse her. You moved 2 years ago so if you can stay put, it is better so she won't get confused again. Of course, you need space for you and the caregiver as well. If you consider sending her to the AL or nursing home one day, you don't have to move. One hour is not too bad. If the house is enough for a helper, it is OK too. You seem to think that in the big city, she can go out herself to do things. A demented person in the moderate stage will need someone next to her so she won't get lost. You may consider an adult day care center for her to go to in the day for activities.
The only thing I would be concerned about being far away is that lots of the health professionals are in the city so the city may be convenient. But some small towns have very good nursing homes so it depends on what resources you have in this town.
If the adult day care center is in the city, then for sure the city is easier. But it is not about the big house. The house only needs to be big enough to accomodate her needs. I personally don't think she needs a big house unless you have other people living there with her.
A big house and a big city are 2 different issues. A bigger house is for more people to live in with her, a big city is for convenient resources. The stimulation and activites have nothing to do with the big house. If the day care center for stimulation is in the city, for sure the city is better but it depends on what you do for Mom. When she goes incompetent one day, the size won't matter. It is the caregiving that matters.
Last edited by ninamarc; 11-12-2012 at 02:07 PM.
The Following User Says Thank You to ninamarc For This Useful Post: kirksfam (11-12-2012)
I'm not sure it is a question of small town big city as much as it is a question of what is best for Mom. You moved 2 years ago. Can I assume it was when Mom was showing signs of dementia? Can I assume it was to downsize and bring her closer to family and a quieter life? What happened... and who is bored with the small town life? Mom or you?
Then we have to look at dementia and it's characteristics. You said she was in the mid stages of dementia. That is the time when they withdraw. This is not because of lack of stimuli but because they are unable to participate because of the limitations of their dementia. They need routine. The crowds, noises, lights, and excessive activities of then hustle and bustle can create a feeling of being overwhelmed. It stimulates us. It stimulates them but they are not sure what to do with this stimulation. Have you noticed that she is unable to order from a menu? Does she get confused in large gatherings? Does she seem to interact less when more than one person is talking? These are all typical. We need to remember that they need much less stimulation than we do. Over stimulation is going to lead to negative behaviors.
Then we have the problems with moving. Any time someone with mid state dementia moves from what they know to a new location they lose familiarity. Mom may be able to find a glass where she is now but she will have trouble remembering where that glass is in a new place. This is because she has trouble storing new memories.... or learning. So this has to be taken into consideration when considering a move. Is it for her well being?
Yes she does need stimulation but it needs to be on her level. It needs to be within her routine. A quiet afternoon with a book of memories. A few close friends and family for a luncheon. A walk in the park. These work much better than a night out on the town. Find something she enjoyed in the past and alter the activity to meet her current abilities. Even setting the table or sweeping the deck work.
Great responses and I thank you so very much. The move would be for mom as well as for me. She's not much of a socializer, but she loves the church, as do I. She has refused day care for two years, but she loves to ride, go out, and interact with people.
Everything I do is for her and what I believe is best for her. She's all I have, really. I thought involvement in church activities would give her something to do - and yes, I go with her everywhere.
I'm convinced the smaller house is best for her, but she complains about it all the time - too small. For safety, we'd have to live in a larger house in a nice neighborhood in the city. It would at least double our rent, but my biggest concern is whether to sacrifice the smaller house (which I think is best for her) in order to give her more interaction with people.
Our church is big, with lots of activities, which I think would be healthy for her while she can still interact with people. She's 88, I'm 68, so we're not much for the night life.
I'm apprehesive about a bigger house, but not about city life since we live quietly. I've looked into nanny cams and I know I'll need help probably within a year. But she's as unhappy about "nothing to do here" as I am.
Your advice seems to be to stay put. I'm taking it to heart and I'm leaning that way. Trying to come up with something else that will satisfy her. But the constant complaining - house is too small, I can't wait to leave, and there's nothing to do - is really wearing me down. Depressing me terribly.
Sometimes if she thinks it is too small, then she may be thinking about the old house she had before you guys moved. It is possible that she was still thinking of the older house. If she is bored, maybe you should think of some activities she can do. Play some games like chess or puzzle (the big ones). Also, there is sundowning. Does she complain more at sunset? Draw the curtains at night. Turn on the light in the house to make it look bigger or brighter. She is probably staying in her living room with tv and etc. Play some music for her. You can call Alzheimer's Association's local chapter and find support. Maybe there are some local support group for you.
Sometimes your Mom may need less interaction so as not to be confused. Play game with her. Maybe there are church visitors who would like to see Mom? Check with the church. They sometimes have visiting program for people in need. Some members may live nearby too. Please note that she probably can no loner join lots of people for church activities as these are for normal people. If she is too confused, it only frustrates her.
Give her the activity that fits her memory level at home. You can read to her as well.
Also you need a break yourself. Hire some part-time sitter to be with her so you can go out.
I'm new to this Board and I don't think my reply went through. Here we go again. I am so very grateful for your response. You've given me ideas to take forward and I'm convinced now that we should stay put. My problem now is coming up with good reasons to give her about not moving, but I'll work it out somehow.
I've been wrestling with this for months on end. Thanks to your replies, I now have a sense of direction and it's such a relief.
Kirksfam... I remember when Mom was in that stage of the disease. She complained about... everything. She lived in the same house with the same friends that she had always had. It was too busy, not busy enough, they came too often, they didn't come enough..... there was always something wrong. She was bored and needed something to do. Yet when there were activities she didn't want to go. Then she moved to Assisted Living. There were constant activities and sometimes several going on at once. Again, she was bored. It had nothing to do with what was going on around her... it had everything to do with her inability to participate in the activities. I remember one day in particular. Mom wanted to go shopping. We never took her anywhere or let her do anything. So I took her shopping. By the time we got in the car and were half way to the store she was in tears. As much as she thought she wanted to be there... her abilities were limited which made doing what she had done before impossible.
As for house size, the smaller the better. There will come a time when you have to keep your eyes on her 24/7. She may want to wander. She will become unstable on her feet and a fall risk. She will be unable to find the bathroom. If there are steps, multiple exits, or large spaces, it came make it more difficult. It can also become confusing. Mom loved her house and didn't want to leave but having a three room apartment was in a way a relief because she didn't have to take care of the "big house". Later she moved to a single room and commons areas and that was even better. Simple, smaller, and routine works better.
Perhaps you can find some local activities that she might enjoy. Go with her for a while and tell her it is for you. See if she will become involved. If there is a senior center perhaps there are activities there. For a while Mom and Dad enjoyed going to the senior gym and then lunch at the senior center. It is worth looking
Yes, you are going to need help. This is not a sprint but a marathon. It doesn't last for weeks or months but for years. I know you love your Mom and would do anything for her... but 24/7/365 is more than anybody can be expected to give. Think about introducing help soon so she can become accustomed to having somebody besides you there. Stay with her the first few times this person is there. Then use them once a week so you can get out and do something other than take care of Mom. It will do you a world of good. If there is a senior care center see if Mom wants to volunteer there. If she thinks she is being useful it might make it easier. If there is a care facility that has respite care perhaps she can go on a vacation for a weekend. It's easier to start early when she can adjust a little better to the new normal. You might want to find a local support group for yourself as well. Check with your local Alz Assoc for group locations. I am saying this from experience being in year 6 of Mom's diagnosis
Sometimes we know in our gut what needs to be done... we just need those gut feelings validated to know we are on the right path. Hope to hear from you again soon...
In a way a big house confuses the demented person even if the other family members live there as well. e.g., my late FIL had been in a big house on his own before he went to the NH in the last 2 years. In the first 5 years, he was confused in the house. He was worried that he had no money for the gardener, he was confused about the rooms upstairs, and he was confused with the neighbors thinking they were the people in "co-op" housing and can give him money... Gradually he didn't even recognize his own house unless he sat outside and said that he painted the house externally long time ago (it was not his own paint anymore actually...) He didn't forget about his house 100% but most of the time he thought it was a nursing home with caregivers by himself! He thought that the rooms upstairs were for a lab for his work by his family! (We never "worked" with him at all.) He was confused by the darkness in the kitchen so I turned on some small light there while he was in the living room. He was always alert and watching the outside from his couch. He would be concerned if someone was in the yard or something. It is lots of worry for him. He was watching the house in a way... He never forgot that he needed money although he had pension so he was worried about keeping the house without money. Later on he had to use a cane to walk so he could no long go upstairs anyway. We stayed upstairs when we visited him from time to time. But he was confused with the house. If the attic has something going on, he was worried. Even when he forgot about the house, he still thinks the neighbors owed him this and that. He no longer knew what was exactly going on. He also refused to fix the house which was falling apart.
Basically it was a burden to him. So when he went to the NH, he was so happy thinking he was working as a doctor like before and etc... His pressure about the big house was gone.
So a small house is better.
OK. I got it now. Thank you so much for telling me what I needed to hear. I'm convinced that we're in the right house for whatever her future needs might be. I don't think I had given enough thought to what the future might bring.
You've collectively steered me in the right direction and given me much food for thoght. I'll follow everyone's advice and find various outlets to help with her boredom.
At this point, she has everything she needs in a relatively confined area. So as the disease progresses it will be so much easier to keep up with her. Plus, there are two small bedrooms right acros from her bedroom, so it'll be so much easier to keep up with her at night here than in a bigger house where she would be more isolated.
This is a tough disease to fight and cope with. The future is really troublesome because I know, against hope, that she'll never get better. I hope I can handle everything as well as all of you.
It's so good to be a part of this supportive community. A heartfelt thank you to all of you!
Kirks... it is difficult to foresee the future with this disease. It is unlike anything we have experienced. It basically turns everything we have known upside down, shakes it around, and then throws us curve balls at every turn. Each loved one with dementia is just different enough to keep us on our toes. And there is so many pit falls and complications to watch out for. Just remember to take care of yourself first and don't try to do it all from start to finish. You will need help. The sooner you start the easier it will be. The journey can be a long one. We tend to start at a sprint and then realize that this is a long distance marathon and we have to reserve something for the end push.
Keeping up with the wondering night walkers is a challenge. If both bedrooms are confined on a hall with it might be easy to put a laser beam alert at the end of the hall to warn you that she is leaving the area. Dead bolt locks on the doors with the keys hanging over the door would help keep her inside. Decreasing peripheral vision will prevent her from seeing a key that far up but make it available if you needed to exit. Audio Video Baby Monitors in her room would let you see and hear what she is doing even when you are in another room.
At some point you may cross from ambulatory to non ambulatory. Pay attention to wheel chair usage. I necessary you may want to make alterations to accommodate.... if you plan to keep her at home.
Know that the top reason loved ones with dementia are placed in a facility is behavioral problems. This includes wandering, night walking, aggression, and combativeness among others. Just know that at any time you can rethink your decisions. There is also medical help that you can get to help with these behavioral problems. There are also techniques that will help. But keep your options open... anything can happen in this crazy disease
In some cases, the demented person goes to the nursing home due to serious sickness from old age and money situation. e.g., we had kept my late FIL at home for 5 years or so but the home care expense was too much and he went to the hospital too much. Also he had walking issue and the house had stairs inside and outside.
You will know when the time comes. If you cannot afford it and it is not possible to keep her at home given the structure and etc. Do it one thing at a time. You will know when it comes. My late FIL didn't need permanent wheelchair until he moved to the NH in severe stage. He never had to be hospitalized again and he liked the NH. Hospital is not dementia- friendly.
Again, I am so grateful for all the advice. Basically, I can't really make plans. I have to wait to see what happens with mom, and I have to prepare to get help and the latter stages will likely require a NH, which I never wanted for her.
Dealing with this is the most difficult thing I've ever done, and I understand that it will only get worse. It takes everything in me not to argue with mom. She forgets what happened a minute ago. All I do is pray for strength and patience - and thank God that he's with me. I tell myself no matter how bad it is for me, it's got to be worse for her.
Gloria... nobody has a crystal ball that will tell you what is next but you can prepare. Even if you think Mom is just fine where she is, you can research facilities in your area. They are not all created equally. Many of the good ones have waiting list. Nursing homes are not your only option. Mom is in a locked dementia unit that is more like a home setting.... even has a wonderful outdoor courtyard. It just has keypad coded entrances. She is free to go where she wants within the limits of the unit. Her bedroom still has her bed, dresser, and favorite chair, a huge picture window, and her pictures on the wall. It is more like home than a hospital. The commons area are arranged as the den, sun porch, and kitchen of a home. Most locked units are limited to 20 or 25 residents and have more one on one care than AL. As the final stages near, Hospice can be used to supplement care. Yes, I promised Mom she would never go to a nursing home, like my grandmother was in, and I feel that I have kept this promise
Nobody wants their loved on in a facility. Nobody wants their loved one to have this disease. But this is where we are... and we do what has to be done for their well being and safety... without destroying ourselves in the process. In the mean time please find a way to give yourself some respite. Many facilities have a respite program that you can use for a weekend, week, or more. It is a good way to decide which facility you might want to use. Or you could use an agency or find an individual that will come in and help with Mom. If Mom is up at night, you might want a night care giver so you can get some sleep. What I can tell you is that your patients is much thinner when you are exhausted. It is better for you and Mom if you get a break once in a while.
I truly believe patience is learned. I also believe that the more you know about the disease and how their brains work, the better you will be at dealing with what seems out of sorts or bizarre. So keep learning and please find the humor in those crazy situations. A book that really helped me with my thinking process was "Coping with Alzheimer's: A Caregiver's Emotional Survivor Guide" by Rose Oliver and Frances Bock. There are a lot of books about the Alzheimer's but this book is for the Caregiver and how to deal with the emotional aspects of this disease. It gives coping strategies and ways of thinking that do help
Keep us updated and know I keep you in my thoughts and prayers.
We also waited 9 months for this NH for my late FIL. We applied when we realized the home care was too expensive and he was getting sicker. But a good home has a waiting list. So you can start looking into it as backup. We also spent a year looking for places before we applied for any. Also the first few years my late FIL refused to go to even AL because he thought he could manage to get a wife and etc. Once he was confused, you just have to make the decision for him. We also waited until he didn't care about the house (he never really cared; he only wanted to be with us.) He did forget about his own house at times. Also the house was falling apart.
The other thing you can do is look into home care agency. Some home care agency knows how to deal with dementia. The home care caregivers can come to your house and help her out and also sit with her in the hospital if she needs to be hospitalized. One warning: she would hate to be hospitalized and hate the tubes/ivs, so someone needs to be with her so she doesn't wander around to get lost in the hospital. The hospital nurses are too busy to take care of demented patients. Although the nurses may know what to do with the patients but usually they don't understand dementia either.
You can look into the resources you have in the local area. Adult day care center or senior center and etc.
One almost insurmountable problem is that we both miss my only sibling terribly - my brother who passed four years ago from cancer. He was given six months to a year to live. He lived only six weeks. We were all so close that his absence is still keenly felt. I feel we will never stop mourning, but mom is beginning to want to do things, which is why I considered moving. Neither of us is happy here. Happiness is elusive and it might never come our way again. We'll see.
Another almost insurmountable problem is that I've been bedridden for most of the past two years with arthritis in my feet. I recently changed doctors and finally have a ray of hope that I'll do better this year. She has me on mega doses of aspirin, and it's working. Some discomfort, but not the kind of pain I suffered the past two years. I've just been sickly. Trying to deal with that and mom. She doesn't accept my illness. Maybe because of my brother's passing.
I have cousins here, but we're not nearly as close as I had hoped we would become by moving here from another state. I don't think they truly understand, and I honestly worry about what will happen to mom if anything happens to me. I don't think they accept that mom can't help what she says or does. And if I say mom's mentally ill, they object because their religion teaches that saying it will somehow make it happen. The irony of that is that it's already happening, so my words can't possibly control her illness.
I feel so alone, and I'm so protective of mom. I'm much more concerned about her than about myself. Life has never been so tough. We just do the best we can.
Let me add that I'm already looking in to nursing homes and ALF. I never realized there was such a difference. I've been determined to keep her with me, but it really is encouraging to read about expeirences at ALFs. I realize that we might have to live apart some day and I have always dreaded placing her into a nursing home. I'm so glad to know that ALFs are viable alternatives and that she might actually find a bit of happiness in one should the need arise.
I would like to clarify that AL is for assisted living and a locked unit or a home for dementia is in another group. A good home for dementia is locked but the residents don't know the lock pad is for the lock. (Some new residents may try to get out but they couldn't unless someone else opens the door by accident.) A dementia unit such as this has the staff who understand dementia and know how to deal with them. They know how to feed the residents in late stage and etc. There are activities that are meant for demented people. An AL is for independent people or the seniors who need some help but basically are on their own (say, someone with heart condition only.)
What your Mom will need is the dementia unit/memory unit. It is locked but it is like a home so the person is not aware of it. My late FIL's NH was a private home for demented people only and it is like a big house in a big yard. It is like hospital rooms inside but each room is like your own room with your decoration.
Some people go to AL first and then transfer to the memory unit when the memory gets worse. My late FIL went directly from his own home to the dementia home in late moderate stage of Alzheimer's.
It all depends on Mom's level when you feel it is time to do something different. There are AL's that specialize in dementia care. Many can function very well in the AL setting which is typically larger and less structured. There are wonder guard programs which warn staff when they attempt to leave the building. The residents do need to be able to do some things for themselves for AL even if it is with cuing. The locked units are basically to prevent wandering. Mom and Dad were in a dementia specialized AL facility to start with. It was only after they were identified as an elopement (wandering) risk that they went to the locked unit. That is why you need to research what is available and determine (at the time of placement) which is best for Mom. If you want to keep Mom at home, put in place some additional help which may range from in home care givers, day care, temporary respite placement, or other creative breaks for you. This is more for you than Mom though it is helpful to get her accustom to others being in her life before the end
Actually my late FIL's NH had 2 wings: one is almost like AL and the other one is for skilled care/severe stage. But they both have nurse station. This is a special place for demented people.
I think either AL or NH, your Mom will need a dementia unit/locked unit. But the time has not come yet. My late FIL never really got lost (only went to the neighbors.) I think the lock for him was prevention but he never really had the issue of wandering since there were always caregiver next to him in later years.
You're all educating me, and I've badly needed it. I'm learning, but I have so much more to learn. Thank you for all your help. You're making the impossible seem possible - and it really, really matters.