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over 1 year ago

Hello John & Fran,

This is probably not going to be much help since I am fairly new at this also. It has only been since June that my mother's (81) memory took a nose dive south. Fortunately, she still has a sweet personality. Although, I will say she sometimes speaks up more for herself now than she did before which is actually a good thing. However, the constant need to monitor, feelings of guilt, desiring to enjoy this time of her life with her instead of being so stressed - as you mention - that it becomes difficult to remain calm and understanding.

You mentioned looking for support. You may want to check with alz.org and see if there is an Alzheimer's support group in your area. The neuroscience center in our area sponsor's space for support groups here. Most people are caring for spouses, (some with A, others with other dementias, a variety of stages) but the stresses are similar in many ways; I attended one meeting so far and found it helpful. Additionally, they have a patient support group monitored by a social worker and held at the same time. I think the patients find it more a social event with coffee and cookies, but it gives the caregivers a way to attend. If there is a local hosp or university that specializes in memory disorders, they may know of local support groups also.

As for the cost, I am in that pickle also and checking into how to afford an ALF that she will probably need in the future. I am presently unemployed, but not able to remain so for an unlimited amount of time. I am now just getting ready to read another caring.com post that looks like it might have some info on that.

over 1 year ago
EPB said...

Get a copy of the book "The 36-Hour Day." It's full of the whys and how to deals that you need at this stage of her condition. Unfortunately when there's a physical problem it elevates the person's delusions and confusion making them difficult to deal with. Don't be afraid to just walk away if need be for a minute to take a deep breath or two, don't be afraid to abruptly change the subject and redirect her attention. Find a radio station that plays music she likes (we found with my late-stage dementia mother that familiar music is a terrific distraction) and keep it on low. When she becomes accusatory, vaguely acknowledge her comment (umm hmmm, huh) then immediately start talking about something she enjoys, or note "look, it's lunch time, y'know I think we still have some of that soup you like and then I was thinking tapioca pudding for dessert." Find something funny to laugh about, if you're stressed out and scared they pick right up on that vibe and it freaks them out too so be calm and relaxed and upbeat no matter what.

You guys will be fine. Yes it's hard to be patient and compassionate all of the time, especially under non-stop duress, but take a minute to realize that she's not doing this on purpose, she's confused about everything, and she's probably scared since everything's so confusing. The 36-Hour Day book really has great info/insight into the mental state of a person with dementia that's a real eye-opener.

Hugs work wonders too. Most times a simple hug can turn an ugly meltdown 180-degrees. So does waiting ten minutes and acting like nothing happened before. Best wishes to you all, you'll do it!

64px-hhf78e2acc60
over 1 year ago

We feel your pain. My 88 year old mother has moderate alz. and sleeps alot as well. Most mornings it is a challenge to get her out of bed by 11:00 a.m. (in bed by 9:00 pm the night before. She gets angry and will tell us to leave her alone and shut the door behind us. It is very stressful to have to go through this most days. We worry about her stress level as well as ours. However, if we leave her alone she would not get out of bed until 3:00-4:00pm. Stay up for a couple of hours and go back to bed. We believe that she is depressed. She no longer lives in her home and gets angry because she is not in her own home. She will say that we are all nice to her but she wants to go home.

over 1 year ago
Pally said...

I have been caring for my elderly mother with dementia for more than 10 years now. I finally moved her into an ALF. This is what you have to remember...your marriage and future come first. You are responsible for ensuring that your wife's mother has a roof over her head, a clean bed to sleep in, and food in her stomach. Beyond that you are not responsible to do anything more than you are able. If your mother-in-law's husband was a WWII vet, she is entitled to $1000 a month pension. It took me nearly a year to get it, but I got it for my mother. That, combined with her social security was enough to get her into a pretty nice 10 bed home and she has a private room. Check with hospice. Check with home health agencies for respite care. Don't destroy your own lives over this. You have to think how YOU are going to manage in your senior years. You can't go bankrupt taking care of your mother-in-law, who has some responsibilty in her younger days to plan for her OWN old age and if things went wrong. Do you want to inflict these problems on your own children because you gave everything away to help your mother-in-law? Hard decisions I know. Callous..no...realistic. Think how much better you ALL would be really if you manage to get her into assisted living. Don't give up. Contact every possible agency to see if she qualifies for services or pensions and God Bless you all in these difficult times.

over 1 year ago

HI There are some medicines that might make her easier to live with including anti-depressants and anti-psychotic medicines You also might go over the drugs she has now because some of those can cause these symptoms and there might be alternatives that dont have the same side effects. Sometimes I wonder if my mom sleeping so much is really her problem or mine. I dont want her to be that way but she might be totally content to stay in bed and watch tv and read. As far as the money goes I am basically in the same position as you are. We couldnt afford an alf so I retired at 57 (causes major health insurance costs) and started taking care of my mom and dad full time. The money does not go very far and I dont know what I will do later when I might be able to go back to work but be too old to get a job. I am just taking it one day at a time and since I dont have any children I really only have to support myself. Pally is right. If there is one thing that being a caregiver teaches you it is to not inflict the financial burden on someone else. I am barely surviving now but I am trying to keep active and eat right and get long term care insurance so that no one really has to support me. I think the problem is is that our parents did not expect to live long enough for the money to run out. They expected to die at home before they needed a nursing home. Now that there is so many meds to keep you alive they are in trouble. My mom's dad died when he was 30 and her mom lived to be 84 but she lived at a time when the interest rate was 8% so she did not need as much money as you do now. My dad's dad died when he was 50 and his mom was probably around 46 so they did not expect people to live as long as they do now. There are many local organizations that can help you find all of the help you can. Some are run by religious facilities but they provide care to everyone. I know that when I started looking into things I was almost paralyzed with fear that I would mess it up. I just decided one day that I did not have to do everything at one and that I did not have to do it alone. I looked into one thing then another then another and did things step by step so I did not get too overwelmed. I also made lists of what had to be done, what should be done but did not have to be done and eveything else. You tackle the have to, then the should and I never seem to get to the everything else but that is my goal. I am not afraid to put things off until I have time. I am still a control freak but just over the have to stuff. I am more pleasant to live with noe then when I was trying to do everything.

over 1 year ago
IDoCare said...

I WHOLEHEARTEDLY agree with Pally. We have struggled with the fact that, even if we wanted to, we can't afford to help my mom, financially, right now. YES!! If your mother-in-law was ever married to a VET, get the application started!! My mom & grandmother weren't eligible, but that's the FIRST question everyone asked us when we were looking for help.

We finally had to say to ourselves that we don't want to be in the situation she is in (financially) some day & put OUR son in our place now. We are trying desperately to save for our retirement & WON'T let anything (including the love we have for my mom) to keep us from our goal of a decent retirement. AND I can't have my young son (or my husband) see the things that I saw when I was young because of my mom's mental illness. You HAVE to protect your own mental state & marriage FIRST.

First, we had to deal with my grandmother, who got more and more "angry" and hard to deal with. My mom would go stay with her but she got abusive & my mom was fearful for her life. My mom would call me & say that she was EXHAUSTED but afraid to fall asleep because she was afraid of what my grandmother would do to her. It IS a REAL FEAR. Grandmother is now in a nursing home & quite happy. She still talks about going home occasionally, but she has made friends there and her mental state continues to gradually decline, but we know she is safe.

THEN it was my mom's turn. She's only 69. She lives alone and has become mentally unstable enough that we can't trust her alone anymore and we live several states away with a young family (I'm an only child--so no siblings to rely on). Last month we had to make the decision to put her into an ALF. She was not against it, she went willingly, but she still has hopes of going "home". We chose a studio apt - because it's really all she needs & it means that her money will last her longer.

One thing I don't understand, JohnFran67, is WHY you are holding the room but not putting her there? THEY are specially trained to give injections & monitor her. (That was one of the reasons we chose to go ahead with the move for Mom -- she needed medicine management that we couldn't consistently arrange in her own apt.) She is waiting now to get her keys back to her car, which I hope will be soon. The consistent medicine management & the continuous social interactions waiting just outside her door have made a big difference.

I'd say to get her into the facility as soon as possible, visit her often and RELAX. It will do none of you any good to worry yourselves SICK.

My prayers are with you!!

over 1 year ago
Ranae1221 said...

Can her current medications have an effect on her mental state? Absolutely! Not just meds, but even something like an infection can affect her mental state.

You may have a difficult time finding an assisted living that is willing to take her with the current behaviors, or if they do, they may not keep her long. I would HIGHLY recommend making an appointment with her primary doctor. Discuss the issues with her behaviors. He/She should do a workup to determine if there is a medical cause for the behaviors (such as an infection, lack of oxygen, etc) and if dementia is truly the cause for the behaviors, then medication may be appropriable.

Then you should be able to find an assisted living that will be good for her.

Have you been able to see if she qualifies for Medicaid? Most states will cover an assisted living placement as it is more cost effective than a nursing facility.

over 1 year ago
dagaro said...

My mother also became angry when she had been with me. She is forgetful and Her anger was due to depression which her doctor prescribed medicine for. She use to get up at 6 am and start cleaning but now she is sleeping later and later and resting more each day. A lot of this is due to age. Other than that she is in good health. Infections do cause a change in attitude also. Please check with her doctor regarding her moods and tiredness. Forgetfulness is also a reason for anger. Good luck and remember ALFs are trained and equipped to take care of residents like this.

over 1 year ago
Momma Girl said...

What do you tell her when she wants to go home? My mom says the same thing all the time and when we tell her its not possible because the Dr. has said she needs to be with someone she gets mad. She will then say its my fault she can't go home. It's get very tiring. Any suggestions?

over 1 year ago
Pally said...

I have been at wits end myself over my mother's reaction to an ALF. Basically, physicians and care workers have told me to just let her anger and mean, spiteful comments go in one ear and out the other. Easier said than done, especially when you are doing all you can for the person and then you are accused of being selfish because you won't take them to live with you. I see a lot of the posts after my first one refer to med issues. Well, what do you do when your mother refuses her psych meds because "there is nothing wrong with me!" You cannot force them to take their meds and I don't feel right about them trying to slip it into her food because she is on to that and then won't eat. You have to start distancing yourself emotionally if your elderly parent is seriously delusional or angry. Because they are not the person you knew and never will be again. Basically, as uncomfortable as it can be for both parent and child, there IS a power shift going on and frankly if you know that the ALF is the best thing for your situation then you have to ignore your mother's comments. When my mother becomes too verbally abusive, I just get up and leave. They are sometimes like children at day care. Pitch a total hissy fit until you leave, then they calm down and get into the rountine. Do what you have to do WITHOUT guilt and LEAVE when it becomes too much. Otherwise, you will become overwhelmed. God Bless.

over 1 year ago

Momma girl with my dad he did not want to go home to his real home he wanted to go home to his childhood home. There was no way to do that so usually I told him that we would go later. Sometimes he remembered that I had told him that and sometimes he would forget until the next time. I didnt argue with hime because that just upset him more. He could take being delayed but there was no way that I could say that it was physically impossible to do that because he wasnt living in today or right now. He was living in the 1930s and I was just some stranger that was keeping him against his will. I would say we are going to eat breakfast before we go. He would eat and then maybe forget it or be content to sit on the porch watching the kids in the park. most of the time I tried to distract him. You take it one day at the time, I guess

over 1 year ago
johnfran67 said...

UPDATE Granny is going to her new home tomorrow. Luckly My daughter came to visit. Well I begged a little. She saw what was happening with her mother and grandmother. Granny thinks my daughter is the neatest thing since pockets on shirts. No arguments, confrontations, ETC. So while the good period is in place and before she gets mad at my daughter. We are making the move to Assisted living. My wife and I have emotions all over the place from relief to guilt to fear about what will happen next. Assited living has suggested we give Granny a couple weeks to adjust. Which would be good but what do we do about Thanksgiving. It just seems we are being cruel. But then I am not sure my wife could take a extended period with Granny. Thank God to all of you and your support. The last few weeks have been off the charts with emotions and feeling. I am quite sure I would have lost it if not for you. Thank you. FJ

over 1 year ago

Hi FJ It sounds as if you are making the right decision. It might help if she helps you decide what to bring with her. Get her involved in the process and she might think it is her idea. Build it up in the mind. All of the activities available, all of the new neighbors. Make it sound like fun and she might look forward to it. Usually they give you a little calendar of events so mention some of those. I know you feel guilty but you are doing the best thing for everyone so feel good about that. There are advantages and disadvantages to everything we do so accent the positive and eliminate the negative as the song goes.

over 1 year ago
Pally said...

So glad to hear the news! Don't feel guilty, really, it is the best decision for everyone. As for adjustment time, yes, it will take a while and you may get some kicking and screaming, but don't back down. Your mother-in-law will see that the decision has been made and it is final. She may say they are mistreating her, or don't like her, etc. As long as YOU are confident in the caregivers, just acknowledge her comments and mmove on. As for Thanksgiving and even Christmas, I would devote this year's festivities to going over THERE for an extended period of time. It is too soon to take her to your home again. It will just add to her transition period. Tell her we are all coming to spend the holidays with YOU at YOUR new home and do just that. She will feel appreciated and loved. But stay firm and believe me you will not regret your decision. You and your wife take a breather. Have a nice night out and RELAX! You deserve it!

64px-hhf78e2acc60
over 1 year ago

Sounds like your mother's behavior is similar to my mother. She to mentions going home most days and sometimes throughout th day. Sometimes I will tell her we will go later and she will forget. Other times she remembers and will get angry and blame me for not letting her live in her own home. She has packed her clothes in grocery bags now and then. It does wear on you and it doesn't seem like they ever forget to say they want to go home. My mother has been away from home for almost two years and she is still gets angry. Good luck.

over 1 year ago
margey said...

My mom is doing the exact same thing - she's lived with us for 6 mos now and can't believe it - says she's only been here a couple days and now wants to go home!!! Gets very angry. I explains that drs say she cannot live alone and she says yes she can - I end up telling her it must be very difficult to no longer have a say in where you live - she agrees with this and seems to calm down when I agree with her..... until tomorrow!!!

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