Hi friends,
I am getting near the fork in the road whereas I must make a decision in the coming months. Mom is quickly drawing to the point where she can’t be left alone. All of you that are care giving for loved ones already know the drills. My wife and I can’t leave home for long cause she is constantly crying because she is afraid of something. Her stove has been disconnected for sometime, but now she is burning up everything in the microwave. So now I am at a point of whats next? I nor my wife cant afford to come off our jobs to stay with her, home health care workers are expensive besides the normal cost of living. Therefore my thoughts are to start looking for a Alzheimer Nursing Facility.
My question to all of you who may be able to guide me is, what should I be looking for in a nursing home? What are the questions I should be asking? How do I prepare her for possible transition? How did your loved one accept it when you and your family decided it was time? Any and all information is greatly appreciated.
Bless Your Spirit!
RevYarb
Most nursing homes show you what they want you to see if you go in to have someone placed. I would say go in to just visit (don't set an appt.). Ask to see the different wards. Check to see if they are clean, if clients are up or still in bed. Also check out the activity areas. If your mom can be active with people her own age she will be happier. I am fortunate that in our area their is an adult day care for day time working hours. But, you have to think of you and your wifes health/sanity. Plus, your moms safety. I have had friends who have good luck with the council on ageing. They will give referals and assistance. Last but not least your local hospital may have a eldercare ward for dementia clients,or a social worker that can assist in this choice. Good luck and God Bless
I wouldn't write off home care assistance so quickly Rev. There are MANY companies out there with affordable and flexible price plans. I am sure your mom would enjoy living out the rest of her life in a familiar environment as opposed to a strange nursing home. Check out "home care" in google and see what you find.
Check with your state's health and senior services department for a list of inspected long term care facilities. In Missouri, the link is http://www.dhss.mo.gov/showmelongtermcare/ so you can see an example. Also DHSS has loads of info on how to choose a nursing facility, options for in-home care, etc. You may also want to consider contacting the local Area Agency on Aging. They sometimes offer an in-home inspection on what can be modified so your mother can stay home longer or what services are available for her.
For you and your family, I have found information at http://www.pbs.org/wgbh/caringforyourparents/ and http://thefamilycaregiver.org/ to be very helpful.
Hello, your courage and patience are in for quite a ride!
We based our decision on my mother in law's ability to help us physically. Of course, there was always one person from our family able to be at home with her prior to the change. We also, couldnt afford any out of pocket at home care expense. Her transistion came when a short hospital stay turned into doctors orders for therapy directly from the hospital to the nursing home. This turned out to be a blessing in disguise because with whatever reasoning ability she has left we could tell her the doctors said it was necessary. I saw some patients there who were content to make it home, then there are those who always want to get out of there. We are the latter, but we know it is exactly what is best for her situation. So we just have to lovingly and patiently direct her attention to other things when we visit. Regular visits help you and the staff make sure her needs are met. I asked the director once, how do the handle all the challenges...she said, 'we change shifts every 7 hours!!'
We kind of eased her into the atmosphere when we had to go out of town for a couple of weekends before the big change. We called and asked if the nursing home had repite capability. Her SS income was enough to afford 2 or 3 days. That helped us both to test the waters. She still resisted, but, I did notice when she was back home, she was bored to death. So at least, they have the many distractions to occupy her time better.
I must say, Caring.com helped us tremendously when we had her at home, and actually still does. We just didnt know what Dementia was all about or how to handle different situations and changes. What's important is that she feels loved thru it all. Someone told me once, even if she doesnt understand being there, you know that you are still showing your love and care with the visits, and all the little things that go along with taking care of her while she is at the nursing home. The side benefit that I also noticed is, the family is physically and mentally able to enjoy her more when we are not so frustrated and exhausted.
I appreciated the last comments and can relate to this discussion thread. My mom is still at home with dad and through a Wisconsin program called IRIS we are able to get about 40 hours a week home care. This is ok for now but I know that eventually she will need to go to a nursing home. I went and visited several times & took my dad once and my sister once. We looked around asked questions & feel that when the time comes we have a safe, healthy place for mom. It's nice to think we can or should keep them at home but I agree with the last response, nursing homes can keep our loved ones engaged and they have around the clock care from trained individuals. That is something I can not give my mom. Everyone's situation is different & it takes time to find the answers.
A nursing home provides 24 hour skilled nursing services. These are very expensive and range from $6000 - 8000 a month. Does you mother have medical conditions that require 24 skilled nursing?
If not, investigate memory care communities within Assisted Living Homes. They provide assistance with grooming, care, medications, etc. and are much more reasonable in cost. Look at several. Spend some time visiting them. Many have respite programs that allow you to have your loved one stay there for 3 - 30 days. This is a service to provide families a way to take a break, a vacation, a business trip, have a medical procedure, etc., but it also lets you 'trial' the care and see how it goes. There is a fee, of course, but there is no commitment or contract.
Another alternative is an Adult Family Home. These usually have around 6 people living there and have 24 hour custodial care. Costs vary widely, as do the services provided, so it is good to do a lot of investigation.
Each state has it's own licensing regulations and rules - these are usually available on-line through your state government website. Also, most nursing homes have a lot of information about both kinds of facilities, as they discharge people to them. They can be a good resource, as well. The key is doing the research, making visits, looking at the quality of the activity program, and finding the right fit for your loved one, and you! Changes are hard for a person with dementia, so you want to make a good choice the first time!
Good luck.
I have just gone through the very painful decision to place my husband in Alzheimer's care. He is at an assisted living facility with a special Alzheimer's unit. I had him stay there several months ago, so he was familiar with it. He has also been going to adult day care at another facility, so he is used to being in that sort of environment. Both of us talked to his doctor, and his doctor told him that I could no longer care for him at home, and that she recommended he go to a place where they could care for him. He accepted this pretty well, and for a few days before the actual transfer, I would bring up that the facility was really a nice place, etc. Have close family or friends with you when you actually make the transition. His two sons flew in from the east and west coasts, and this helped me tremendously. One thing for sure, you can't go it alone with this disease. I also got a lot of help from the facility with suggestions about how to approach it. We told him that we were going to "try this for awhile to see how it goes." He accepted that, and when I went to visit today for the first time, he asked "how did you know where to find me?"
Please check with your Office of Regulatory Services to see if the nursing home you are considering has any complaints or investigations for problems. My Mother was only in a nursing home for 90 days while my Father was dying but she was verbally and physically abused. The day I gave thirty days notice and returned she had a head injury and was bleeding profusely while the staff was standing around getting their story together on what happened. I understand that it is difficult to care for someone after I have been in the role for 27 months without a day off but please check in often and at different times. You will be shocked at what goes on in these places when the staff doe not realize you are paying attention. Everything from sedating the patients to ignoring their basic needs. It is a crying shame how the elderly and helpless are treated in some of these facilities.
Because of a bad first time experience, I have the questions that can help you determine which facility is best for your mom. Keep in mind, these questions were developed for an ALF ( Assisted Living Facility).
Rates:
1. How much do they charge?
2. Would mom's income of $XXX plus Medicaid waiver suffice?
3. Do they take Medicaid Waiver to help pay for services?
4. Do they help with the filing for Medicaid Waiver?
5. Are they registered with Social Security office?
6. How would payments be handled?
Medical Attention:
1. Is there an in-house attending physician or do we choose a primary doctor?
2. Do they work with specialists (Cardiologist, Dermatologist, Podiatrist, etc) that come to the home or does the family pick and transport patient?
3. Psychiatry – Do they have a preferred attending physician, or does the family pick?
- We currently have one; can we keep him if we choose too?
Medical Records
1. Do we have access to view medical & drug documentation of the patient when requested?
2. May we get copies of such records when needed?
Behavior
1. How does the facility handle difficult behavior, like wandering or the patient going through drawers?
2. Constant requests to go home?
3. Are the caregivers prepared to handle the demanding behavior of dementia?
4. At what point will the patient be evicted from the home due to behavior?
Stimulation
1. Are there Spanish speakers in the home?
2. What activities take place for mind stimulation?
Visitation & Family Outings
1. What are the visitation & phone call hours/rules of the home?
To Cheryldavis-
When we found out that mom was being sang to that she was "crazy" in the head, I almost lost it. My sister and I requested to have mom "stay over the weekend". We gathered her things in large bags, and it was pretty obvious that we didn't have plans for her coming back. We gave a 30 day notice in writing to comply with contract, we even offered to give them the next month free, but mom will not step foot in there ever again.
Needless to say, their pride didn't allow them to keep the free money, they just accepted the letter and denied all allegations. Always visit without making an appt nor letting them know before hand by phone. Just show up.
I think mom was being picked on, because we were micro-managing the owner of the facility. We requested to see records, and asked to speak to the home attending physician. I think we overwhelmed her and brought to light, she was never prepared and didn't want to share records. We decided to micro manage her because there was no trust established. And so I think that is why they were emotionally disturbing our mother.
I hold on to Caring.com pages and usually read them later, as in this case. I find all of these replys very helpful at this time. I work full time and my husband, age 77 with Alzheimer's, is still able to stay at home. However, he is deteriorating quickly, it seems. I have just started looking into facilitiles that accept Medical as we don't have the means to pay for anything ourselves. It certainly is a difficult process, to say the least. In the meantime, his anti-agitation medicine has greatly helped the last few days and I feel fortunate to read feedback offered on these pages. Good luck and best wishes for a wonderful Holiday Season to all of you.
Hello RevYarb,
My heart goes out to you because I've just gone through a number of hoops concerning my own mother, including getting her qualified to go into a nursing home in California. You didnt mention what state you are from, but it was an absolute God-send when I met an 'advanced estate planner' from San Jose, Ca. He got her qualified for Medi-Cal, dispite the fact that she owned her own mobile home, had a checking account & an annuity.......all was totally legal. To sum it up, all she pays the nursing home now is her social security & she also has AARP which is included in her social security check & ALL of her assets are protected. There is a website I discovered in southern California that does the very same thing as the planner did for me out of San Jose. I hope I am not incorrect, but from memory I believe it is nhscare.com.......it stands for Nursing Home Solutions. Check it out. In my particular situation, my 86 yr old mother at the time (she is now 88) was declining both physically & with memory significantly. I had to stop working & move into her home but it came to a head when she went into pneumonia & I had to call 911. She was in the hospital 3 days & 3 nights which qualified her for Medicare to let her go into a nursing home. (which I had no knowledge of, it was a whole new ballgame for me) I had only inquired at one other nursing home in which they said it was 8,000 for a private room. I didnt look further into that one. But when the time came for her to leave the hospital, I had her nursing home (now) referred to me. It is clean & everyone there is very congenial. The only draw back is that this one continually looses her clothing. They have now reimbursed me 3 times in less than 2 years which has gotten very aggravating. I believe they are kind to her which is more important to me than anything. One other negative is I dont feel they stay on top of her personal hygiene as much as they should. She developed a rash on her bottom at one point & her teeth dont get brushed reguarly which is a big thing to me. If I had known what I know now, I'd be particularly interested in these aspects. They do have good activites & are aware of there whereabouts all the time which I very much appreciate. Hope this has been of some help to you. God bless!
Dear Faithful in Ca...
I stumbled upon your post & being you are in California, I am so excited to tell you about looking into nhscare.com........It is a company in southern California that can get your husband qualified to go into a nursing home without selling your home/assets to pay for a nursing home. I went through an advanced estate planner in San Jose, Ca. that got my mother qualified for MediCal without having to sell her mobile home, 'spend down' to $2,000 as MediCal would have you believe you have to do, OR loose her annuity that she has. I checked out my estate planner with the BBB & discovered he was/is a member in good standing & he's done what he does for 40 years. THEN I discovered this site in southern Cal. that I just mentioned to you that does the very same thing & has for close to 30 years, helping people keep their homes & assets & still getting qualified for MediCal. It is all totally legal. My 88 year old mother (now) is probably in the 6th stage out of the 7 of dementia. Theres no way I could take care of her. I tried for 9 months until it all came to a head. I was almost on the verge of panic for weeks. I'm an only child & my father has been gone for 23 years, I was divorced & I had NO one to help me, no one whatsoever to help except God above & I give Him the credit for all that has transpired. I have since been sent a wonderful man & I'm remarried, although my heart aches to see the decline in my mother. Dementia is such an insidious disease. I hope you check this avenue out & that it can be of great help to you!
BrendaLee
Thank you very much for this useful information. I will try to check it out soon. It's hard to believe I will have to place my husband in a home, away from the comfort and love from me and our little dogs, but that time will come soon, I think.
My siblings and I have been advised by my father's neurologist that he needs 24 hour care (up to now he has lived independently with daily help from home care aides). We have explored 24 hour care in his home. With the current agency we use his savings would be gone in 1.5 years, at which time we would have to qualify him for MediCal (California's Medicaid) and he would have to go to a nursing home, and we would have fewer from which to choose. A less expensive alternative is hiring an independent 24 hour caregiver, but then we would be responsible for employment taxes, workers' comp, and my responsibility for personnel management would increase (coaching the caregivers is already really time consuming because my dad is difficult). So we are concluding that we need to move him to assisted living, which would actually be cheaper than his current set-up, at least in the beginning. It is heartbreaking, even though we found a good place and know it is the right thing, because his prejudices against it, his connection to his dog, and his inability to realistically assess his need for care, will mean he will really fight this. I guess I could use some reassurance and encouragement that my siblings and I will survive his likely anger and resentment and disappointment. Getting my anti-anxiety meds refilled tomorrow!
To Judithmft:
Yes, please do get those anti-anxiety meds filled. You will need them to get through these hard times. God knows, I have.
But I can assure you that during these hard times, you will make it through. He will be angry, he may even say things that will make you feel guilty and aweful. But remember, its hard for anyone to give up their independency. Keep in your heart and your mind, you are doing it for the right reasons, and for his safety. You will have to grow a hard skin, when your around him when he goes through his moods. Be strong, in front of him, and try to explain (although they won't understand)...and have a good cry all the way home. Vent, let it out.
Your doing whats right, its part of our job as the parental child...
Believe me, I have been going through this since Aug, and its not over for me. I go through a rollercoaster ride, and I just hang in there. I love my parent, and safety and health is number #1.
Wow. What an amazing thing - instant support! Thank you so much for the great words. That helped.
I hope Rev Yarb is absorbing your good words as well. Wonder how he is doing?
It is very hard at this stage. The good news is also the bad news, in a way. As the dementia progresses he will forget the anger, about the dogs, and his house. It's great that the anger goes away, but it means that the disease is getting worse. It helps to just take each day as it comes; be thankful and enjoy the good days, and they will happen. Be calm, patience and remember to say "I love you, Dad." every chance you get - even in the face of the storm. Something that I have always held onto was said by Sister Theresa. "They may forget who you are, but they will never forget how you made them feel." Let that be love.
Judithmft---
Please read my above post of about 28 days ago. Since it sounds like you are in California, PLEASE check out nhscare.com (Nursing Home Solutions)
It is a God-send for many. If you go to that site, they will send you a free DVD & inform you of just exactly what they do. It could just very well be the answer for you. God Bless!
BrendaLee :)
I have been taking care of dementia residents for many years and now it is time to look for a facility for my Mom. My advice to you is to besides looking for cleanlinest, activities etc is to also find out about how they treat their staff. We have several facilities around where I live that pay really low wages and they have a very high turn over. Dementia residents need consistancy and have a hard time with new faces. Find one that uses the gentle care model so they can sleep in and wake up on their own. Nothing gets residents off to a bad start if someone goes in and drags them out of bed when they are not ready. Where I work right now making beds etc is very low on our priority list. We try very hard to focus on our residents first. (Some days are more challenging then others though)
I can't believe what good advice is given on these Caring.com pages! Everyone's advice is so good for all of us, regardless of the stage we are in. After looking into "skilled nursing facilities" for which MediCal will pay for, I know I want to keep my husband at home as long as possible. No matter how good a facility, it is still very depressing. If RevYarb's mother qualifies for Medicaid (or MediCal in CA), there may even be an adult day care that is covered. My prayers are with all of you.
BrendaLee, thanks for your suggestion. Actually, NHS Care is not appropriate for us at this time because my father needs assisted living not a nursing home. Might need them in a couple of years, and will certainly check them out further then.
Pedy - thanks for your points about other ways to assess facilities. Certainly it has been my experience with ANY type of business that if the staff aren't happy and stable, nobody's happy!
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