could use some opinions

[brite23]

My mother in law has pretty significant alzheimers, probably entering the severe stages with the occasional foot in the moderate stage. She is still living at home with her husband. He does his best for her and she is cared for. I have a few questions though and concerns. One, when does one take a serious look at long term care? Are there any cut and dried protocols to this or do the caregivers just wait till either they burn out or the patient is in such bad shape that there is no other option? In our case, she is mostly unaware of who we are, often is not aware of who her husband is, doesn't know her own home quite often and wants to return to her childhood home everytime I see her, sometimes asking as much as 8 times in 15 minutes when someone will be picking her up to do so. When is it 'time' to look at long term care? What have others on here done?

The other question or concern I have is about my husband and my role in occasionally caring for her while my father in law takes a break. They live over an hour away and he will leave her with us for several hours at a time, sometimes a few times per month. My husband has to take time off work to stay with her which is hard for him as he doesn't get paid for missed time. It causes her great distress to be here for the most part. Because she is not always aware of who we are, where she is etc., she obsesses about leaving almost constantly and is often bordering on angry about it when she is told that she has to stay with us till she is picked up. As I mentioned, this can be as often as every 2 to 3 minutes. Leaving our home is pretty much her total focus when she is here with us. She has tried to leave the house and I feel that I can't even go to the washroom unless someone is sitting with her. Our children, now teenagers love their grandmother, but they are finding it very, very stressful to watch her anxiety when she is here. My husband wants to help out and finds it very difficult to see our side of how this is affecting us. When I suggest that a daycare in their own town may be a better option when his father needs a break, I am accused of wanting to institutionalize her and then I feel guilty. I do not believe that having her stay with us for hours on end is good for her or us, but especially for her. Am I wrong to think that she would be better cared for by professionals in a daycare situation? Do my children and my feelings about this count or should we just remain on the sidelines? I am so frustrated and feel so helpless. I would really appreciate any input. Thanks.

[Jo6]

I'm sorry about your MIL. I helped taking care of my MIL until we had to place her. Your concerns are most important. My hubby is the oldest of 7( 1 deceased) and he has had the lions share of decisions and he is not alway popular to say the least.

You and your family should be considered in this matter. They are lucky she has been able to stay this long in her home. It sounds like she is pretty far along in the Alzheimer's. Maybe you could sit down with hubby and discuss this when she isn't there. He also needs to consider the fact that his dad is not going to be able to care for her alone much longer.

It'sa hard place for you to be in. It will also break your health. I will write more later. My MIL fell Friday and broke her hip. She is in the hospital as we speak. Surgery was yesterday. I don'y know what will come next, but we will deal with it as best we can.

I feel for you as well as the rest of the family. Personaly I would not wait any longer to place her. A Nursing Home is a far cry from being in an instution. I'll come back later. Take care, Julia

[Jo6]

does your MIL "roam"? We live on a HWY and I was totally frightened she would walk off. I would have to be up most of the night because she wouldn't sleep. She took to gathering knives and sharpe objects and etc.

She was a danger to her self as well as us while we slept. I finally went to her Neuro and just told him I was at the end of my rope. He agreed and gave her Ambien. It wasn't perfect but it helped.

Honey, you don't want to wait until you are burned out. I can tell you a lot of things, but I know you have hubby and FIL to contend to. Maybe you could all get together and talk this out. None of us want to Place our LO's, but there comes a time when you have to suck it up, do what you need to do but make sure your own care is properly adressed.

Good luck and Maybe others will come by and talk to you , or just listen. Don't be shy in doing so either!! Take care, Julia

One more thing, You and I both are "in-laws". We sure do bad raps sometimes, but nobody knows what this will do to you. Just ignore the "you're just an in-law". One day they may need you and you won't be able to help. Take care dear, Julia

[Tootsie]

Hi brite and welcome to the Alzheimer's Forum. Julia and I both are regular posters here as we both have helped care for someone with this condition. I'm never quite sure if I should call it a disease.

First of all, there is never "one" time to consider long term care in a facility. Your mother-in-law's family should be visiting nursing homes and considering where to place her, when the need becomes overwhelming. That event can be very sudden, and is best planned for in advance of the need. If your father-in-law's health fails, and that can happen with a fall, a broken hip, a stroke or heart attack or a simple case of the flu, she will need to be placed within 24 hours.

I see no reason why your MIL should be transported to your home when her husband needs respite. Your MIL doesn't know him, you, your home, or who anyone is. Why is it necessary for her to be in your home? Alternatives might be a home nursing aide, that you and your husband could help pay for if money is an issue,(even if you have to get a job to help pay for it,) a day care center, if there is one in her community, or a brief stay in a nursing home the family is considering for placement.

Since I am in the USA, I'm not sure what services are available to your father in law. Is the national health service of Canada a service provider for Alzheimer's Disease or is the family responsible totally?

Please try not to feel guilty. Believe me, we all, still feel guilty at times thinking that there must have been something more we could have done. Those thoughts are finally fading for me, 20 years after my mother died! We all have done and will do as much as we can.

Unfortunately, one of the emotional mechanisms that families resort to is the guilt trip, especially for women, who have always been the caregivers. It is not fair to expect your children to deal with their grandmother's issues. For me, that was the deciding factor in taking my mother to a residential care home. My children would not longer bring their friends in the house. Gramma walked around with her housecoat on, sometimes not buttoned (I think she had forgotten how to button it), put her bowel movements, neatly wrapped in toilet paper, in her pockets, in her handbag, urinated in waste paper baskets, would come out of her room, fully dressed at 11 PM thinking it was morning. My 14 year old son would pull the big recliner in front of the front door, so she couldn't get out without waking him. She never wandered but would open the door, look out and say, "My it's dark out there." He was afraid she would get out and we'd lose her!

My suggestion to you would be to look into all the services that are available in your MIL's community. Talk to the administrators, seek out supportive groups, determine cost. Then present all your findings to your husband, your
FIL, and other family members concerned about her welfare.

Also, think carefully about what you are willing to do, what you can commit to, and how to protect your children from any emotional turmoil that might ensue. Share your concerns with them, tell them about what you find out about services, alternatives, etc. This IS a family problem and needs a family solution. State to your husband and your FIL how you feel about the situation and don't let them lay that guilt trip on you. Keep your emotions under control and say it again, and again, and again, how you can help and what you are willing to do. For example, her laundry, visit twice a month, etc.

When I decided to move my mother from our family home in the east to Calif, I decided 2 things. One, I would NOT give up my part time job. It was my outlet, my profession, my sense of self and security and also the means of my children's college education. Second, I would not tolerate any interference between the relationships in the household; between my husband and me, our children or their lives. It was she who would have to leave, not us abandoning our relationships for her sake. Most religions have some form of the commandment to honor thy father and mother. It does not say give up your own life, hopes and dreams for them.

Let us hear from you as you progress through this process. It is not easy but you will survivie. Cheerio.

[brite23]

Thank you for your kind words and help. A big part of my issues are that I am the inlaw and therefore in the 'mind your own business' end of things. My FIL although a great guy, can be controlling. Not in a mean way, but in a way that says 'stay out of it'. We have not been made privy to much in the way of information at all and as a matter of fact, have been quite left out of the loop for the most part. My own family is so not like that and we would band together if this were our mom on all levels and I find this very alien and frustrating. I think that it has been very important for him to keep the reality of how bad it is under wraps due to fear that he may be pressured into making tough choices about her care. I am health professional and this makes it even more concerning because I tend to see things in a more cut and dried fashion. If this were my mom, she would be placed. No ifs ands or buts about it. But in this case, I have no say and my husband just goes along for the ride as he too, is frustrated. There is no sitting down with my FIL and discussing this. That's not how that family works. Sad, but true. He will keep her home until there is no choice, that has been made very clear. As for her coming to us to look after her, I think my husband has had that discussion with his dad and it is known that this is not working out for her, me or the kids. His dad has agreed that it is too difficult to keep leaving her here. Maybe the tide of change???

This has been such a sad journey and each day is as good as it will get for her. I feel bad for my father in law, my husband and his brother and for the grandkids. I can see that having to make the decision is difficult regarding a nursing home but I can't imagine this going on much longer. As for her wandering, I don't know because we aren't told much about her state. She's probably doing lots of things we aren't hearing about. Thanks again.

[Tootsie]

Hi brite23,
Thank you for clarifying the situation with your MIL. Perhaps the most helpful thing you can do at this point is focus on your FIL's needs to nourish and replenish his energy. Certainly, he will realize just how important his own health is because he is the one his wife relies on for her care.

I think you could still leave brochures for him to look at, share any information you can obtain in an informal, "oh, by the way....." type of format, and keep him updated about when his wife needs to see a doctor, etc.

I was fortunate, in that many of the people I worked with, ran residential care homes. These were basically foster homes with live in care givers, licensed by the county, to care for impaired adults, who did not need a more sophisticated type of care, demanding a licensed professional. Some of these people were immigrants, who ran the care homes as a way to get relatives to this country. Since no employee would live in, the relatives stayed here, worked, received social security credits and when they retired returned to their own country with a retirement financed by the US Social Security Administration.

Feel free to let us know of your frustrations and anguish over the situation. Julia and I, and perhaps others know how that feels and it does help to share. Cheerio.

[rumpled]

I am in a simliar situation at brite23. My FIL will not listen to reason nor make the changes needed for his health and well being, let alone our lives. My MIL has progressed extremely quickly into dementia where in less than a year, she is incontinent. But she has lucid moments so that is why my FIL is so much in denial about her dementia. She never slept well and that always effected him and since he has essential tremors, the worse he sleeps, the worse his hands are. The doctors asked him to get 24 hour care and wanted a home but my husband and FIL wanted home care and FIL only agreed to 5 hours for one aide just 6 days in the morning. It is barely working out to keep her safe and constantly he calls us for emergency visits or the police to pick her up off the floor. Her arm has been broken already. It took that to get the help the first time. We constantly are interrupted and have no weekends for the cooking, shopping and caring for them. I am very ill myself which just compounds the issue as I am now disabled and can do less than I used to do for even our own household so that leaves more work for my poor husband. But still he will not speak to his dad about getting more help or overnight help for his dad even though that is when he needs it! He does not want to push... I mourn for it will be another break that will bring about a change. Why it has to be a tragedy and pain for his mom to bring about change drives me nuts.

[brite23]

Again, thanks for the input. To further complicate things, my FIL helps out with the Alzheimers Board here in Canada, is aware of all the help he can recieve etc and no, money is not an issue for them. It is about letting go and I can understand that this is very difficult for him. It is not up to me being on the fringes as an inlaw to change anything that he decides to do, it's all in his control. The one thing that I do have say in however is how this is effecting my family when she is being dropped off here and the stress it causes for us and her. She was here again yesterday, my husband had to take the morning off (I work as a health care professional) and although the day started off ok as she seemed to be having a better morning, my husband said that within about 2 hours she was unaware of her surroundings and fretting. When I was getting ready for work, I witnessed her asking repeatedly when she would be getting picked up although her mood was ok. My husband did have a talk with his dad about how this is not working out anymore and other arrangements need to be made soooo, we'll see how it goes. I can see that my FIL is burning out, he is not thinking as clearly as he used to and he is aging physically. If anything should happen to him or his health, she would need to be placed immediately as we cannot care for her. Here in Canada, that pretty much means that she would need to go wherever there was an empty bed, you don't necessarily get into the place you've chosen right away. What will be, will be and all I can do is make sure that my children continue to have a relationship with her that does not include having to witness what happens to her when she is dropped off here. Like I said, if this were my mom, it would be going very differently.

[rumpled]

My MIL constantly is asking about going home even in her home... to which her husband just takes out his hearing aid and then complains that she is hard headed! He is not getting this at all... Money is an issue with them. She screams so police have been called by the neighbors but since he does not hear... Now her meds are better and she is calmer (she sleeps most of the day) but now he complains that she does not talk to him... he simply is not "getting it" even though we bring him articles and have hired a case manager to try to get him to get the proper help, he simply ignores the advice. We just do what we can to make sure she is not badly hurt but I feel one of these days, she will be. He simply cannot take care of her. He is too tired (as anyone would be!) and does not understand her illness at all. The other day she asked to go to bed with her clothes on and he argued but ended up agreeing with her - but but her on top of the bed with no protection... well she really needed to go to the bathroom and proceeded to let go all over her clothes and the bed. His shaky hands cannot replace her diaper at night nor clean her adequately... I worry about infection but so far I am the only one who worries!

[Tootsie]

Jennifer, you really do need to focus on your own health needs and let your husband and FIL work out some program for your MIL's care. Certainly authorities are aware of the situation, if both a case manager and the police have been involved. Perhaps before long, there will be some kind of official intervention to resolve the care issues. The police will not continue to answer care giving calls that can be assigned to other types of services.

Difficult as it might be, you need to be very clear with your husband, just what you are able to manage, as far as responsibility for any care of your in-laws. Enlist the support of your doctors, as they are knowledgable, about how the stress created by the current situations, impairs your own health.

Keep in mind that some medications may lead to incontinence and other side effects that make some care giving tasks worse. Perhaps she is incontinent because she already has a low grade urinary tract infection? Is she seen regularly by a general practitioner, nurse practitioner or internist? You do not indicate what country you live in so I am not sure what kinds of health service you have. Cheerio.

[brite23]

To Jennifer... your situation makes mine look like a cake walk! As a health care professional myself, I can safely say that you are in no position to be looking after anyone but you. You absolutely need to put yourself first and by doing so is not being selfish, you are being self preserving. Your health is worth it. How sad for your MIL that her husband refuses to see this for what it is and get them both the help they so obviously need. One thing that I have pointed out to my husband is that his mom would not have wanted anyone keeping her at home if it meant that their lives were ill effected by it. I said it in the hopes that he would pass that onto his dad. Maybe someone needs to say that to your FIL too. Where are the rights of the patient? Even though they can't speak for themselves anymore, surely those who know them and love them would be able to step up to what it is that they would have wanted had they known years ago that this would be their fate. My mother in law made it very clear that she would never want to be a burdeon to anyone. Now all that power has been taken away from her, without her permission. Your MIL too. Guess we need to get it in writing before we get ill and that way, we retain the ability to dictate how our care takes place IF we can no longer speak for ourselves.

[Tootsie]

brite23, reading your last post brings back so many memories. My mother with Alzheimer's Disease disease 20 years ago and many of those days are no longer a daily thought.

However, I always knew that of all the people in the world, my mother was the one who would know, what the burden of her care placed on me. Right now I find myself tearing up at that thought. Soon after she moved in with use, with the approval of my husband and 4 almost adult children, she told my husband that she thought her being here was too much for me. That was 7 people I was cooking for every night and we all know, that if you cook for 6, one more doesn't make any difference at all! When she arrived, I did not know that she was in the early stages, but it was apparent after about 3 weeks. Cheerio.

[rumpled]

Brite... Awww... we all have our problems. I try to tell my hubby that perhaps home is not best but he is convinced it is himself so there is just no talking him into something a bit more sane as they think she will get no attention at a home. What I fear - and dollars to donuts will happen - is that they will end up spending all their money on home care and then end up in a cruddy medicaid home when they can no longer take care of themselves. I tell him from time to time that in order to get into a nicer one.. well, you have to get on a list, get in and then they cannot kick you out when medicaid pays. Shame as his mom is a sweetie... and his dad is stubborn rather difficult person.

And we just spent a few days with my mom who is more along the lines of the stubborn diffucult person... refusing to make changes in her home to make it easier for her to stay there after two strokes, take care of herself or the home. We get it on both sides... so now have to work on her and get her somewhere before she burns the house down. Or it rots.

[Jo6]

Jennifer and Brite, I can say I have been in situations very much like your's. Being in the US I know what Jennifer says about the NH situation.It isn't a pretty picture and also a shame, but we have to work with what we have.

I have a friend that lives in Canada, her mom has A.D. It seems that our mom's are about athe same state health wise. She has had a horrible time getting her mom in a Nursing Home. Brite, being "in the system" use every thing you know to speak loud for MIL. I know you already are and yes it is such a sad journey.

It is hard to be in the DIL position. The families think we are superwoman. Well, we aren't and we also have our limits. Both of you need to think of your selff, still caring for MIL, but on your turms, not their's.

I know it is easier said than done. I still struggle with that curse word "guilty as charged". Don't take it on, girl's. Take care to all of you.
Jo

[barbarina]

My mother came to live with me several years ago when her Alzheimes was beginning to interfere with her everyday functions. After 3 years of caring for her alone I made the decision to find her an assissted living facility when she started trying to get out of the house at night. I never regretted it. She was well cared for by a very compitant staff and I no longer had to fear for her safety. I think it's commendable to those who are able to keep their family members home in a situation like this. I know for me I wanted her home with me but knew I couldn't care for her on my own. I use to have to wait until she was asleep before I could take a shower for fear she would figure out a way to get out of the house. I saw her everyday and helped with her care when I visited. I know I felt a lot of guilt at first when I moved her to the facility. But She actually liked it there and never tried to get out. It was a wonderful place and felt and looked like someones home. My mother passed away almost a year ago. I really believe I made the right decision and as a result I also was able to take better care of me in order to be there for her. I really believe in assissted living.

[rumpled]

Well, my husband and FIL say flatly NO to my poor MIL who is suffering at home IMHO. She sits on the sofa and sleeps all day, keeps him awake all night and has no activities to keep her mind going. He cannot keep her clean when she has accidents in the middle of the night but refuses to get help for overnight and now his health is suffering for not sleeping. Both of them are basically healthy (no cancer, no other major health issues) so this could go on for a long time with them just dragging each other down. FIL refuses to get more help -and hubby does not want to push so it puts a burdon on us to keep going over there to pick her up, cook, write checks, take them around etc.

My mom really belongs in assisted living but insists she wants to stay at home. Her home was filthy. Literally maggots were crawling the walls but since her second stroke, she cannot see. She just wants to sit and smoke and stay with her cat. If we asked her what she wanted to do, she said she wanted to die and hoped her next stroke was the last. She does not want to live near me (14 hour drive) and is 6 hour drive one way from my brother. We just cleaned up what we could but she won't let us make any changes that will help the house. She falls down and it would help to have less furniture and clutter but she will not let us get rid of it. We did fill bags and bags of garbage so maybe the cleaning people hired by the charity organization can clean *some* but they will not clean like we can as literally every surface is covered with stuff and that stuff is covered in a thick layer dust and nicotine. Her walls are yellow and gross. The house smells like smoke and cat pee but she cannot smell it. Wish we were so lucky. She is starting to go downhill mentally as well as physically but just fights any changes. But in ths case, my brother who is older does not want to agitate her and well, me, I would just roll in and clean her up if my arms worked. She is already mad at me.

[Jo6]

Barberina you did what was best for mom. I can appreciate that. I don't know if you had siblings or not, but there are certain circumstances where Social Services step in.
Girls if you do not step in and be firm you will be the one needing care. If I sound a bit pushy I don't mean to. I just care. I don't know if any of you know my "story". Well, it's been right here with me since I joined BrainTalk when it was MGH/Classic or what ever they called it. since 1997 or 1998. I've been here so long I feel like I have grass growing under my feet:D

That doesn't matter. how long I've been here, I just wanted to share a few things. My MIL has Alzheimer's Disease. She was too far along to go to assited livinng, but I sure wish we had sooner. She is across the HWY in their lock down NH for those that can not care for themself anymore.

None of the siblings like me. Well, who cares? I am there for MIL not them! MIL was showing signs of neglect on all fronts. Eating/not eating, her bath and no she didn't want help, so she insisted. Condictions were getting to the point where she needed someone to be with her night and day. Hubby and I both were the only 2 out of 7 that seemed to notice or just didn't care.Another DIL took her to family Dr. for BP check,that done he made her an appointment with a neuro Dr. Well bless my soul, I was asked to take her because every body else were working or other excuses.
The Neuro Dr. dx'ed her after a short examine. I came home. told them all, they didn't believe me, had to get 2nd opinion, he said same thing. I tell you, those sibs. still hate me and it has been years!!

Jennifer, does MIL go to DR? Get her SS? Anything where home health people have come to house? To both houses in your case? All they need is a call or visit the office and request them drop in and let them see. It sounds like your FIL is as bad off as MIL is. He is getting his attention form all the others, including your hubby. You seem to be the only caregiver around. THE MONEY! ahha I don't have a clue how much but it doesn't need to be much to cause people to get crazy notions!

My MIL had money, but even if she didn't hubby would do the same about the Nursing Home. He is the only sib. to speak up and try to do what's right.
This very day, he is sitting beside her bed trying to keep her hydrated. She had Dr. appoimtment. She doesn't know us and haven't for a long time. hubby says that doesn't matter, he still knows who SHE IS! We didn't forget her , put her in a Home! He was looking after his mom. Was she happy? about 4 or so of the years she's been there she tried to make us feel sorry for her and take her home. I felt so much guilt and I have had to work hard to forget guilt!!

About the money, at 4000.00 a month it doesn't take long to go through that. Recently she went on Medicad (s) She has someone else to make sure all the patients are cared for.
Recently she fell and broke her hip, after a partial hip replacement she had a stroke. Her right side is paralized, her swollowing too.

there are laws concerning the elderly, being mistreated in the home as well as hospital or Nursing Home. Family members can be punished by law if they have LO's that are being neglected or mistreated in any way.

I am not trying to be a know-it-all or pretent I know every thing. I am not a medical person or work in law office((lol heaven help us all))Everything I have posted is from my experience with MIL.

I hope all of you find the help you are seeking to help your MIL. First of all you need to take care of your own health. I care about each and every one of you................take care, Julia aka Jo

[Tootsie]

There is one more way to get someone from the community inside the house, in the US. Anyone, can call a local police department and ask for a "welfare check." They will send someone to the house, to make sure the person is all right. If the phone isn't being answered, if you live a considerable distance away, or you have reason to believe something is amiss, all, are adequate reasons to call. Of course, if you do this very often, there are other agencies that might be notified and then you can be, "in the system," so to speak.

We all know that sometimes it does take extreme measures to avoid further misfortune. Cheerio.

[rumpled]

My MIL and FIL are both just millimeters away from broke so it is not the money. FIL is proud as can be and does not want to accept help. I just found out tonight that MIL has a nice stage III bedsore... so hoping that the doctor will insist on overnight care. Apparently the aide did not see it and the FIL... well, he *thought* it happened when she broke her arm last year [huh!] even though it was on the other side of her body and oh yeah a year or more later.... The police are there a lot (she falls once a month at least and he cannot pick her up) but as the place is nice and clean and she is not sceaming anymore... well the surface looks ok so as long as that facade holds out, they will not dig deeper. I told my hubby AGAIN that his dad is NOT an adequate caregiver and an infection like that can kill his mom and if I had not taken his mom to the bathroom, well, who knows when it would have been discovered... his dad simply cannot understand what is important and what is not. I insisted they take her to the doctor ASAP (Monday) and FIL thinks I am nuts. She just went to the doc a couple weeks ago and FIL insists that the huge hole in her thigh was not there then... BULL ptuootity. That crater did not appear in a week.
He is not going to be able to keep her moving to keep her from developing other sores.
I am contemplating calling senior services on my mom... her living circumstances are just gross. I don't want anything from her - I would rather she lived well and spend the money on herself... but she is just not taking care of herself at all. She could but will not.