Looking for Advice & Resources for Helping Caregivers

I'm in the same boat. Except my father in law had a massive heart attack then a major stroke and minor stroke, which has left him unable to speak or communicate in any way, and a portion of his body is paralyzed. My mother in law had to quit her job and now stays home with him at all times.
She needs someone to talk to, to vent to. She lost the man she loves in a sense and she is lost with how to go on with life as it is.
One thing you need to find out is how her finances are going. We quickly found out that my mother in law was supporting themselves by living on credit cards because she knew no other way. She had never handled the family finances. She knew nothing about their future retirement plans or how to go about anything financially. That was a tremendous burden that we came along side her with.
The other thing would be to insist that she get away by herself every now and then. She needs time to breath away from the situation. We try to go over and stay with my husbands dad twice a month so she can go grocery shopping or do anything to get out for a few hours. Sometimes I take her shopping at the mall or go to other special events or other places, even out to eat, while my husband stays with his dad. She needs the break, she may insist she doesn't but she does. My mother in law always feels guilty when we go, but it always puts a smile back on her face.
If she doesn't have a best friend that she can cry on their shoulder, I encourage you to be that person. There have been many evenings where I'll go over to my mother in laws and we'll sit on her porch and she'll just let it out, after he's gone to bed. She plays so strong for so long, but she has to break eventually. I can't imagine walking in their shoes, the men they've depended on are leaving them helpless and in a position where they have to make all decisions and handle all problems. It's not their fault, but it's an extremely exhausting and an unrewarding job. There is no positive hope for the future only harder times. Please let me know if you need to talk. I can try to help.

Please don't feel alone as sadly, this situation is repeated in thousands of homes on a daily basis. Progressive dementia steals life from everyone involved. Each family member needs to understand that grief and loss can occur long before the actual physical death of the person with the disease and everyone deals with it in a different way. A couple of thoughts--contact the Alzheimer's Assocation in your area for resources, look into Adult Day Care and consider a hospice evaluation. Hospice is not about dying, it is about making the most of what life is left. Hospice can offer help to everyone in the family in dealing with their grief and loss both now and after. Adult Day Care can offer a break for the primary care giver and make a bad situation more bearable. None of these services are mutually exclusive and you will have to find the compliment of services that will best meet the needs of your family.

C. my heart goes out to your MIL I was the caregiver for my husband the last 10 yrs of his life he was a wonderful husband and daddy and was always apoligzing for being so much bother.he went to heaven 4 yrs ago It takes so much out of you but if i could do it all over i would I'll be praying for your family
Sue

This has to be very rough. I really do not have any advice for you. I just wanted you to know I would pray for your mother in law and your husband and family as well. This has to be a very difficult situation. The only thing I could think when I read your post was just be there with your mother in law...listen to her and just be that shoulder that she can lean on.

C.,

My name is J., and I know where you are coming from on both sides. First, my stepfather, who was loved so much by all of us, had alshiemers. I became a caregiver for him, as my mother was a diabetic and in a wheel chair. So, actually I was caregiver to both. I watched mom as she greived and was short with my stepfather and hurt that she was so short. After he passed away, he basically was her love of her life, she went down and pretty much did not do anything for herself until she passed away. Now I am living it with my husband of 9 1/2 years. He has a mental disorder and is on hospice due to liver failing, diabeitis, & pancretitis. Because of the mental problems and the medications, along with the liver failure, which causes mental confusion, we go through hard and confusing times. Sometimes, even the help others are giving become a problem. The nurses and the doctors cause a lot of confusion, but you are afraid to make waves because they may not help anymore. Then there is the financial confusion, due to lack of sufficient income. All of this and the hurt and fear of losing the one you love, and actually dealing with the thoughts of death.

The one sustaining grace for me is and always has been, My Jesus. He promised He would never leave me nor forsake me and that I could call on Him in time of need and weakness and He would give me grace and strength. He said I could prayer for those who are in need and He would help them. He does not always deliver us from the problem and the fire, but He walks with us. He said, If you believe in Him and abide in Him and His word abides in you you will have peace even in the time of trouble. Pray for your MIL and FIL and just be there to give hugs and love. Love reaches out in needs. Are finances a need? Don't wait for her to ask, just give! Even if you have to do it anonomously. God also said He will bless those who reach out to the poor. He said give and it shall be given to you good measure, pressed down shaken together and running over! Cook meals, offer to sit with FIL while your husband takes MIL out to dinner or something. Ask God to give direction in helping her. And just remember, she can't help being short sometimes. I NOW KNOW what my my went through. It hurts to know you are losing your love, and know that you can't really treat them like the man they want to be, for safty's sake, makes it really hard! It is harder on them when they are lucid, because they know that your ar hurting and they can't help you!

I don't know if this has helped but, I put ya'll on my prayer list. Another thing, sometimes she may feel like she can't love him and can't take anymore! I have been there, many times!! I throw up my hands and cry to God and tell Him I can't take anymore, I have no more love and I need Him to intervene! He Does! He floods my heart and my thoughts with His love and compassion! His peace and comfort overflow me and I can respond gentler and more patiently! God is good and He is able to keep that which we commit unto Him! When we confess our weakness, He makes us strong! CALL ON HIM! Also know that ya'll are not alone!

God Bless You All!
J.

Hi C.... I am an RN, retired but now volunteering at an Adult Day Care Center. People bring their relatives in to this facility to have a day to shop, be alone, exercise, etc. Your Mother in Law needs some time to herself. If you can do some of the "sitting" with your father in law, that would be great... and your husband, as well... Everyone needs to take turns staying with him, if possible. This will take some of the strain off of your Mom in law. Also, doing some of her household chores ... shopping, laundry, maybe cook a few meals for the freezer... any thing to make her load a little lighter. She needs to talk a lot, and ventilate about her feeling for being in this situation. There are tons of books about Caring for the caregiver. The caregiver needs as much care as the "patient". Make sure she gets out frequently.. Also look up info on the internet re: this dementia.. the diagnosis.. There are many things that can be done to help your Dad..

i have lost a mother to dementia in july 2004 and it is not easy. she would see things that wasn't there and swear that they are there and things. she got so bad that my older brother had to get power attorney and put her in a nursing home which i didn't agree with and things. she turn against me and things on acct of what the other kids had said and one time i went to the nursing home to see her and she told me she was going to get a gun and shoot me and my husband for taking all of her stuff and things. that crushed my heart so bad that i couldn't go back to the nursing home to see her anymore. it was so sad that the other kids turn my mom against me and things. so i know what u all r going through and things. my mom has been gone almost 4 yrs and i still missed her i just can't get over her death at all. i will keep u in my prayers and things because i know what u r going through and things.

Dear C., I wish you and your family all the best. I currently work daily with patients with mental illness and their families. Usually the first thing a spouse thinks about is I married this person and it is totally my responsibility; this is not so. They must first realize that they can get help. First speak with you MIL and find out if she would be willing to speak with someone who could assist her and they can also help with the emotions of other family members. Try to locate and call your local hospice center. They not only deal with terminal patients, but they also deal with homebound mentally ill patients. If your HC doesn't provide this care ask them if they could recommend someone. Also, you can contact your local hospital/physician's office and request information from them. There are groups and services that come into the home and help you take care of the patient. When a person attempts to deal with a person that has a mental illness - usually they don't know what to look for, they don't know what to expect, and if something happens they usually are so overwhelmed they don't know how to deal with it rationally. It is kinda like an ant moving the dirt out from under a mountain to move it from where it stands. Good luck! I hope this helps you and you family. May God give you strength and comfort. M.

I was in a similar situation caring for my husband grandmother. She was in a nursing home but I was the one that visited and took care of everything for her. It was very trying b/c I work full time and had a 1 and 4 yr old. She was also very demanding.

I would recommend meals or helping around the house. Taking your little boy would probably help a lot b/c my husband grandmother would just beam when the kids were around.

Also check into agencies around there. We have "Area Agency on Aging" here. They have services where people can come in and help around the house or even help with baths etc. It might give her MIL some time to get out of the hosue.

Hope this helps and good luck. My prayers go out to you and your family!

My heart goes out to you and your family! I became my mother's "keeper" at age 9 after a tragic car accident. She recovered after several surgeries,etc. but not to "full" capacity. Even through my teenage yrs. & married (military) she still dependend on me mentally! My dad passed at age 60 so it was in my hands again. She's 86 now w/demincia and I had to realize her care was beyond my control and I needed help. She had home health care until she had a series of "mini" strokes over several yrs. Vowing to never go to an assisted living or nursing care facility she stayed at home until the doctor "over turned" her desire to stay at home with me doing all her cleaning, cooking & care besides raising a family & working full time. We checked out the local nursing homes & got references....you still will have to visit regularly & be a big part of her daily "routine" and even then things can happen...I moved mom twice for reasons I won't mention but now she's in a very good care home & getting along good....for her condition. You need to look for a place that will accomadate both parents in the same room or apartment but with medical staff available on site. Loosing your memory is frustering for everyone....but there are support groups for caregivers & family. I encourage you to find one & get involved so you'll know what to expect. It's a sad event but allowing the patient to still be the parent is a must....diginity....! Please do your homework & most of all don't feel guility for decisions you make. You'll also need to make sure legal matters are in order...so when the time comes you can legally make decisions for them. Laws are different depending on where you live. So much involved legally. If you want more detailed info. PM me....good luck.

I am sorry that your family is struggling with this. It may not be time yet, but please start a dialoge with your MIL regarding hospice care. Ask her to talk about it with your FIL's primary physician so that when he/she feels your FIL is eligible they can get the help your family needs - so many families are introduced to hospice when there are only days or hours left, but a hospice team can provide so much for many months before. Hospice can provide intermittant nursing care, assistance with ADL's like bathing, coverage for medical equipment and medications, some housekeeping work, spiritual and social concerns, respite and crisis care, grief counseling, and so much more. I was a hospice nurse case manager before becoming a SAHM, so if you would like more information please feel free to pm me and I can try to help answer specific questions you may have.
In the meantime, there should be several resources in your IL's area to help (I don't know if they live close to you) but here is a link for resources in Alabama
http://www.caregiversguide.com/al_state.html
also the local chapter of the Alzheimers Association might be able to provide you with leads on helping care for a loved one with dementia
http://www.alz.org/index.asp
There are a lot of resources available once you start looking, some are state/federal funded, some are private pay, and many will have some level of financial assistance to offset cost depending on your IL's monetary situation. Care can range from medical in-home nursing care to light housekeeping services to just elder sitters. There may be an adult day care location that your MIL could take your FIL to on days when she needs a break or must run errands.
Also check with your MILs church for leads as well. If your FIL needs hospitalization for any reason, make sure to speak with his caseworker or discharge planner regarding additional resources for when he goes home.
My best advice is to remain supportive to your MIL. Try to help her in anyway you can, especially by giving her a break when she needs it. Dementia is a terrible thing to have to watch a loved one go through - and somedays she may just need to get away, and somedays she will be angry and hateful that she is watching the one she loves vanish before her eyes.
May God bless you and your family as you travel this road together.
In Sickness & in Health: Caring for a Loved One With Alzheimer's by William M. Grubbs
Journey through the Dying Process: Caring for a Loved one at the End of Life by Fairview Health Services
On Death and Dying by Elisabeth Kubler-Ross

You can't take her emotional pain away, but you can help with many of the practical day to day chores. Come do her yardwork or hire someone to. Come do her housework or hire weekly cleaning help. Make a schedule of family or friends that can sit with your FIL for a couple hours when your MIL needs to get out. I'm sure she is having a hard time getting groceries bought or getting her hair done - not wanting to leave her husband alone. Bring in meals for her to reheat. Taking some of the burden away can help ease her stress in caring for your FIL.

My grandma took care of my grandpa at home. She was very independent and fought all assistance for awhile, but slowly came to accept it. She really started looking forward to the one morning each week that she could get out and run errands, get her hair done, etc... We also made sure someone sat with grandpa every Sunday so she could go to church and stay for coffee hour. She always came back refreshed and with a smile on her face.

Oh yeah - and visit often. Someone to talk to and a grandchild to make you smile are great medicine! I always brought dinner and dessert with when we came to visit so as not to create additional work for Gma.

There are local support groups for this kind of things, Please found your nearest group and get all the information you can. Also please found some how to let her take some time off from this hard phycail care for him. I know there is a book writen by Sandra Day O conner about her caring for her hubby during this time. I know it tells of how she use to take him to the Supreme Court when she was still on the court. It also tells of a relatship her hubby had with another patent, I wishes I know the name but ask your local book store and they should know.

I would suggest (both for you/your husband and your MIL) going to www.nami.org. There are message boards for family member and caregivers, but there are also support groups and classes. I have been to these and they are such a tremendous help. Just knowing that you aren't the only one dealing with it. Also, even though he requires her constant attention, she really needs to find some time to do her own thing. Even if that means hiring someone to come in and take care of him one day a week or something.

(((hugs)))

This is a tough one C.. I am not certain how many siblings your husband has but perhaps if there is another you guys can each take "weekends" to help your MIL so she can atleast get out of the house. Of course she seems like she is a pretty resourceful gal and will not openly accept help, so, you guys are going to have to INSIST upon it. I also recommend you contact your local hospice organization as they usually have resources available regarding the death and dying process and can put you in contact with local support groups and direct you to specific resources that may be available in your community. I did notice that you did not mention the FIL's physical status and it may NOT be rapidly deteriorating but dementia is a part of the death/dying process no matter how unkind it seems to come right out with it. Perhaps your husband just needs to be the one who comes right out and states the facts/demonstrates tough love to his mother. The message should be: 1) We love you 2) We are here for you 3)You HAVE to accept help either from us or a social agency 4) If you keep this up mom, you will not be able to help DAD muchless help YOURSELF. Is it possible to hire out a home health aid to assist? Check with hospice or visiting nurses services. Depending on the status of your FIL's overall health, his Medicare/2ndary insurance may cover this service.

Hello C.,

My name is J. and Im a CNA. I have worked with many different situations & enviorments. It is always hard on the families to try to take total care of the family member with dementia. It helps so much and relieves alot of stress off the main person that does all the care giving. If u would bring in a CNA from a home health agency or a private sitter for a few hours a day or everyday. Trust me this helps so much and will relieve alot of stress of the family. If u need some more infomation on how to get home health started coming in or some more details bout things. Please feel free to email be back. Or a private sitter works out great as well. But I have expereince in private and home health along as nursing homes. Hope this will help u some.
Thanks,
J. P

Hi C.,

My dad has been this way for nearly 10 years now. He has lost his ability to read, write, and speak. He does vocalize, but it is not coherent. He doesn't recognize anyone. It has been a tough journey for all of us.

My mother refuses to put him into a home, and I completely understand and support her decision. When dad's dementia first began, I gave her a book entitled "The 36 Hour Day". It is a guide for caregivers like your Mother-in-Law. My mother has read it and still reads it every day. She said that out of all of the resources she has (she moved back to her hometown where all of her brothers and sisters live: they are all retired now and help her tremendously), this book has been the main source she turns to on a daily basis. She said that the first time she read it she felt that it literally was written about her.

She does get out of the house at least 3 to 4 times a week to do some light shopping and to get her hair done. Someone sits with my dad for 2 to 3 hours so that she can get some time away from the house to herself. She wouldn't do this at first, however. For approximately the first year she wouldn't leave him at all, and her health began to fail both physically and mentally. She wouldn't open up about it; but she did have emotional outbursts such as screaming, crying, etcetera. That is when I found "The 36 Hour Day" and gave it to her. It completely changed her. Although every day is a struggle for her, she keeps a very good outlook on life now and understands (and accepts) my dad's disease. This is not to say that she still doesn't have her bad days; she is only human. But it is wonderful that I have my funny, bubbly mom back. It is very easy for the caregiver to 'get lost' in the spouse's illness, and I watched my mother's personality disintegrate for a long time. But with the support of her family, friends, the book, an outside support group for caregivers--it's kind of like AA--you can get information on the groups from your local clinics and hospitals, and her own personal goals (she has starting journaling and writing poetry, and one of her poems has been published), she has renewed herself and held on to her own identity.

Caregivers are much stronger than we give them credit for. They just need the right resources. My mom plans on compiling her journal into a book someday, and she hopes to have it published. She says now that her life is completely different; she feels that my dad's disease was almost like a blessing because it led her to pursue goals that she never would have otherwise.

I give you my love and prayers during this difficult time in your family. I hope this advice was helpful to you. Hang in there~it will always be hard, but it does get better.

~A.

Hi C.,
Just went through something similar with my parents-- my mom was diagnosed with Altzhiemer's but we now believe it was dementia as that was what happened with her mother. Mom was stubborn and wouldn't take the meds (this is all part of the disease) and you'd have to coax her into it. My dad was trying to care for her in their home. They were both in their 80's!!!!! Mom had a light stroke and the doctor wouldn't release her to go HOME, but released her to a skilled nursing facility (nursing home). The nursing home was terrible, and Dad had to check himself in to be able to stay with her round the clock. AFter about 3 weeks of that, my sister took them to live with her and hired round the clock caregivers to come stay with them, as well as having hospice come in. Hospice would have been a wonderful thing in a larger area such as Oklahoma City where we live, but down in the area where they lived in southeastern Oklahoma, it was terrible, and they did what they wanted and got away with it on a regular basis. My dad spent every penny he'd ever saved, including the proceeds from selling their house and all of their personal possessions, paying the live-in caregivers. Medicare will not step in until you have spent every penny of your own money, and you aren't allowed to have more than a certain amount coming in from pensions/Social Security, etc. even after you've spent your life savings. I don't know where you live, but if your mother in law could get the home health care people to come in (this must be prescribed by the doctor)they can help her with light housework and check on your father in law with each visit (take his vital signs and have a look at him). The guidelines have been changed for hospice patients in the last couple of years so that he might be able to qualify and get his meds paid for. But you can't have home health care AND hospice at the same time. Hiring a caregiver is expensive, but might be the answer, depending on thier financial situation. If Mom and Dad had put their assets in one of their children's names 5 years earlier, it all could have been saved, and Medicare would have paid for everything, had we only known. Good luck, C.. I just lost both my parents -- Dad in Dec. and Mom in Jan. It has been a hard 18 months for us since this all happened, and we had to learn all this by trial and error. I hope this information helps.
C. P.

My cousin's husband was diagnosed with dementia at the age of 40. His decline got progressively worse. Be prepared to have to put him in a nursing care facility at some point. My cousin's hubby stayed at home for as long as possible but eventually he couln't eat without a feeding tube and had to have his diapers changed regularly. It all became too much as she had a 2 yr old son to care for also. My thoughts go out to your family.

I'm 58 yrs. Old female and we lost our father 3 yrs ago in feb. With (dementia, alz. Or louie bodies as he was diagnosised in houston)my mother kepted our father at their home for a few years till one night someone called and found him walking on the side of the road about 1 mile from home. Thank goodness their was a va and he was a veteran, they had a program called "resped" (mispelled) that kepted him for 2-3 wks for their caregiver to get some rest. He was on a waiting list , we looked at alot of nsging home, but we just couldn't, at that time as he knew what was going on most of the time. Finally when his name came up, mom was ready and we were also. It was hard for all of us and him also ,but now that we look back it was the best thing for him and my mom. She and i would travel to the city to va in pineville,la. For the care they gave ur dad. It the toughest thing i had to do, but one we never regretted. If you'll don't put him in a facility make sure you put dead bolts on all the doors.. Praying that you'll can have peace with all your decisions...lousiana

I am kinda in your shoes with my grandparents, you must try to be patient with the mother, she is so lost and angry at the world for what has happened to the man that she loves. I have worked in a nursing home on the alzheimer's unit, it was trying and very hard even for an 8 hour shift. Try to give her a break...offer to stay with him for a while and have someone take her out for lunch or to a movie. It may come to the point to where someone in the family has to stay with them 24/7 in order to help relieve some of the stress. My best wishes and thoughts are going out to you and your family.