How do you cope when your Alzheimer's parent doesn't remember the family?

To answer your first question, yes, it's the Alzheimer's that is robbing her of her memory of those your mom loved. It's difficult for us to imagine that someone would forget their spouse of 50 years but that's the Alzheimer's working on her brain. It must have been very upsetting to you to realize that your mom no longer knew who your dad was, that those lovely memories were gone. It's a horrible disease.

As far how long you can care for your mom at home that's a personal decision you're going to have to consider based on many things such as how safe is she at home, are you able to really care for her at home or would she be better cared for in a nursing home.

If she gets to a point where she doesn't recognize you and you scare her because you're a stranger to her that would be the point, I would think, that you would have to place her in a nursing home. Be prepared. Have a facility picked out, get on some waiting lists for a bed, have her paperwork together. You don't want to be scrambling while your mom is screaming for help because she doesn't know you anymore.

On the other hand, that day may not come. She may just accept that you are a person who cares for her and she may be comfortable with that. There is absolutely no predicting when it comes to Alzheimer's.

I'm sorry you have to go through this.

My girlfriend kept her husband home until he became violent. That is the number one consideration: Safety, for all concerned. The second is Health: when YOUR health is compromised, when you are exhausted, you have to call in the pros, or you die before the patient does. 30% of caregivers die first.

My father does not remember that my hubs and I are his family.. normally he just thinks we are the people that live in the house with him. We deal.. I know its the disease. He also does not remember Mom is his wife alot of the time. But he knows we all love him. However it is hard for my 26 year old daughter. She is the only grandchild, and handles it well, but sometimes she crys over this. however, it has not affected our ability to take care of dad.

I understand the grief you are feeling--I have heard people talk about the small deaths that occur along the way when people have dementia. You begin to lose pieces of your relationship with them, too, and you just need to find a way to allow yourself to grieve while also maintaining your present loving relationship with them.

I have not seen the movie about Glen Campbell, but I have a sense that it might address a similar issue as his disease progressed. I was also very moved by his last song, recorded for his life, in which he sang he'd be okay near the end because he would not remember anything, and so could not feel hurt.

But I also think that it is important for people to find connections with the people they love as they are and who they are. We have small joys in our lives, though they are sometimes hard to see.

It might also help to find a support group of other caregivers who can offer you ideas and hope.

Best of luck to you.

Janice

Mom's dementia is getting worse. I'm getting worried because of the expense of facility care. When there is not enough money to pay for this expense what is one to do?

I know that my husband knows me and depends on me. I don't know if he knows I am his wife. He rarely says my name. We have been married for 35 years. When I recently showed him our wedding picture, he recognized himself but when I pointed to myself and asked him who it was, he asked, "Who's that girl?" I laughed and told him it was me. You have to lighten up. It is not the patient's fault. The Alzheimer's robs them of the memory. My husband sometimes looks at me and says, "you and me, together, right? Forever? Right?" and I always answer, "Yes, forever!" What else could I say?

Does your state offer
Home and Community-Based Services (HCBS) Waivers?

Home and Community-Based Services Waivers (HCBS) are programs for low-income Massachusetts residents who qualify for nursing facility or other institutional care but want to live at home. The HCBS waivers allow MassHealth to pay for a wide range of health care and support services that are provided in residents' homes or community settings rather than in an institution.

Home and Community-Based Services Waivers (HCBS) help:
to live safely in their communities, to prevent or delay institutionalization, or to return to their communities after living in an institution for a period of time.

Contact you local "Aging Services Access Point" (ASAP)
Ask about programs for people who need a nursing facility or other institutional care but want to live at home

My husband doesn't always know me, but I always know him.

Your a wonderful son & bring tears to my eyes.

I am a R.N. too & have the skills to deal with this & I so believe that sometimes loosing one's memory is not so bad? Other times it is terrible especially when your the enemy; don't know if you have been there & if not, hope you don't have to go there. Made me smile that you pulled out your drivers license to show her, I'll use that one. Thanks. See, you help me.
I so don't wish to ramble. Early here where I am & still dark....

You are a Blessing....Listen to Pam....she gives great advice.

It is WONDERFUL that you are taking care of your Mom. So many families just walk away. If her behavior changes make sure that it is not a UTI (urinary tract infection). You can just tell her that you love her. Do not raise your voice. There are a lot of memory care facilities. Check them out visit in the afternoon and especially weekends. Trust you God given fibs as I call them. In most states there is programs. There is also most assisted living facilities have day care so to speak. One day a week would be good for your family and for her to go visit her new friends I call them. If either one of your parents were in the military there is help for the veteran as well as the spouse.

It is a punch in the gut. I can only agree. The younger of my brothers, the one my mother sees least of, dropped off her radar recently. "Oh-oh," I thought.

I think it's asking too much to whip out photos and expect them to make any sense to her. On the other hand, at a very good dementia care unit I was at recently, a lady stopped me in the corridor to show me a photograph of the people she was 'looking for' - her family had made a sort of "rogues' gallery" mounted in a 12" x 8" frame, showing who everybody was, with clear labels and connections, which struck me as a very good idea for future reference. If your mother had something like this by her all the time, it might help.

I'm in the process of creating a small definitive album for my mother to keep by her, but I'm not sweating over it. Because to me the key thing is, is this bothering your mother? Is she distressed by her fading memories? If you're not doing it for her benefit, don't persist with the struggle to help her remember, or not more than you want to, and can do kindly, anyway.

How long can you keep her at home if she begins to fail to recognise you? From her point of view, it's not a practical issue. From your point of view, it depends on whether or not you'll be able to adjust to that. It's very hard on you, but what difference does it make to her if she doesn't know you, or doesn't know the professional caregivers who are looking after her?

Alan Bennett, the playwright, describes going to visit his mother and asking her if she remembered him. "Of course, you're my son!" she said. "And what's my name?" "Oh, I don't know that," she said, as if he'd asked her a completely unreasonable question.

It is very hard, very cruel. I'm sorry for what you're going through.

I don't know how to cope on this, actually. My grandma lived with my family and didn't have any idea who any of us were. As a child, it was hard to understand. I doubt that it helps that you're an adult. It's just a hard thing to deal with and it's natural to feel sad about it.

As a side note, my mother only has mild memory loss, but when she moved in with me, I had this idea that we'd finally go through all the family photos and make notes on who was in which photos, make a DVD of it, and send copies to everyone in the family.

The first photo was of my parents, brother and I, taken when my brother and I were quite young - she took one look and said, "who's that?!" - and that's just with mild memory loss. I haven't tried, again - not sure if it will be fruitful.

Jeffery20832 ~ I feel for you. Alzheimer's Disease is the cruelist condition. It's no wonder it is deemed "the long goodbye". It is emotionally hardest on the family and the family caregivers. I remember my grandfather (who years ago was never diagnosed with anything other than "old age") becoming more and more distant to our family. He lived with my Mom & Dad until his passing. It was particularly aggravating to my Dad because he would repeat stories over and over again from WW II and his younger days. This was his father-in-law and I think he was upset because he could not care for his own parents the way my Mom took care of her Dad. But that's another story.

I always enjoyed going over to my parents' house and listening to his stories over and over again. But, of course, I didn't live there day in and day out. In the last year of his life (he was 90 when he passed), I decided to bring him to my house for Thanksgiving and let my parents go out for dinner (to give them a break). I am so glad I did. It gave me fond memories of my grandpa that I will never forget. I loved him so.

I noticed in the last few years he didn't really ever call me by my name, but I think he did "know" me as a familiar face. His granddaughter -- probably not. But he was always smiling and happy to see me when I visited.

To your question, "When an Alzeheimer's Disease patient is questioning who you are, how long can you take of them at home?" You will know the answer to that question when the time comes. When you can no longer emotionally/physically cope with day-to-day caregiving and/or YOUR or your wife's health are suffering, it probably will be the time to place your Mom in a Memory Care unit. The progression of disease only gets worse in time so thinking ahead to find quality care for your Mom is essential. Ask friends and other family members for recommendations of facilities in your area. Ask at your Mom's doctor's office. The staff should have recommendations of who you can contact. Don't wait until a crisis develops -- be proactive.

It is the hardest thing, I think, for a child to make the decision to place their parent in a nursing facility. But my thought is that I would want the best care for my parent where he/she would be clean, safe, well-fed and happy to the extent possible. You are in my thoughts and prayers on this most difficult journey.

My husband of 42 years suffered from Alzheimer's. He actually called the police one day to get me out of the house as he thought I was an intruder. It's very sad when they no longer know who you are. Unfortunately it got to the point where he was combative, probably out of fear of this 'stranger' in his house, taking his things, trying to poison him, etc. When it became dangerous for myself, and also for him, as he would try to 'escape', he was placed in hospice care. This was a blessing for both of us and for his daughter, who watched him deteriorate day by day. Stress will take a toll on your health, so when the time comes, don't be afraid to put her in a safe place where she will be cared for by professionals. I wish you the very best! God bless you for your loving spirit.

I know how you feel. My mother is 82 in the latter stages of dementia/alzheimers. She questions every night the home she's lived in (the last one) for 15 years. She thinks this is a temporary place she is at. Knows me because I care for her every day. She knows my other siblings when they come by and then forgets soon after. I have a brother who is dying and I'm not sure I will even tell her as it will be upsetting and then she will forget she even knows. Barely remembers her husband of 52 years and forgets him name often and the fact that he died 11 years ago. It is getting worse. I am sure the need for nursing care will come. Right now, no insurance, no extra money for expensive memory care units, it's just me.

Jeffrey, I know that feeling of your Mom now knowing you. I was in a support meeting about 5 years ago and burst into an unconsolable state of tears. You will get over it with time. Their memory will come and go and then more go and so on. Its ok, you still know her and love her and thats all that matters. I wouldnt push the photos, etc, all you want to do is keep her happy.Photos and asking questions confuses them and can send them into a sad place. Remember, she is always right, just agree agree agree. You'll go through many stages, some where you might need a little bit of help from the doctor (depakote rx), but keeping her in your home is priceless. Lock the tops of your doors with the old chain locks and hang in there. My Moms been with my husband and I for 7 years now in our home, she is 93 now. She cannot walk, talk, is incontinent, and hasnt known us for at least 5 years. Its ok. we love her to pieces. I keep telling her what a fantastic Mom she is, how pretty her eyes are, etc. and she laughs. She loves music (she cant see well, nor understand what she sees). We sing to her, put on Lawrence Welk, Elvis, Christmas songs, etc. She is one super happy lady and the doctor, and my family, are so proud. I am not saying its not the hardest work you will ever do, but the most gratifying in your heart. I hired a morning bather M-F after I started to crack up and weekend help every other weekend so we can go out, and its a huge help. In the beginning I used daycare as I was still working fulltime, she could walk then. We will never put Mom in a nursing home, she is with us for life. Just holding her hand and being close is what they need, I cant imagine her being alone in a nursing home. I am here if you need any questions answered for at-home care. I am going to go hoyer Mom into her recliner.
PS My Mom is considered a bedridden person but she can still hold up her head so I wont give into that. We even bought a used handicap van and take her on vacations with us, with hoyer in tow, Shes the lucky lady. I could only hope I could get such care if I get this! Mom wakes up laughing, what does that tell you? Good luck!

You are doing a wonderful thing caring for your Mom, and having the support of your wife. I flew back with my Dad from our home state 8 weeks ago. I had been driving an hour away to a memory care facility to check on Dad, as there was nothing available in our coastal town. A week ago we moved him here. We are older parents still raising teens and a child in college. I knew I could not bring Dad here as our lifestyle is too busy..husband self employed, travels extensively, chauffeuring of teens, dog. My Dad would jump out of his skin if I opened the refrigerator at their home. We were unable to have ice since Mom had to turn off the ice maker, as Dad would jump every time a cube fell. I spent endless hours putting together large framed beautiful collages of the family, enlarged favorite family photo's..I made my family crazy because I am a perfectionist and wanted every family member represented and it had to be a great picture. I Had the maintenance at the Assisted Living hang them..Dad could of cared less. He went straight to the bad of peppermints I had brought him. I have the same fear you do. I have yet to hear him say my name. He did tell one of the Nurses when she said there goes your baby girl...Yes, that's my oldest daughter. It's painful leaving them, my Dad wondered once and was picked up by a wonderful man, but could not remember his address but did remember my brothers, he was dropped off there. My Mother never left his side she was always so fearful of him wandering. There is joy too! During my last visit Dad's comb that he always carries in his pocket (he still has beautiful salt & pepper hair at 80) broke. Of course he talked about it and then decided to blame me for breaking it lol, of course I told him I will get you a new one. As soon as I hit my car the tears flowed..it was late and I was exhausted (school starts at 7:30 here we are up at 6:00..on the road at 6:45). I headed straight to the only stores on my side of the river..bought the small combs, larger combs, boar hair brush, I just had to make sure he could comb his hair!! Back to the AL again..Dad was still sitting in the TV area. I said let's get to bed Dad. Got my Dad ready for bed, changed him as now he is occasionally incontinent. I rubbed some lotion on his cracked heels and feet and put some soft clean sock on him. I pulled the soft furry new blanket and quilt my hubby bought for Dad.."pull that all the way up to my neck, ok Sissy" and " you be careful driving home." That was the first time I tucked my Daddy in and he did remember my nick name..that's good enough for me!

Sometimes people with considerable dementia "come alive" with music. You might try playing some old favorites.

It shocked me when my mom at 82 did not remember her husband who had passed. She lost all the memory of my dad and their 46 years of marriage. So you can not talk of old times, as they simply do not remember. I said, to her, Im your daughter. She said, I didn't even know I had a daughter. Of course that hurt me. Them sometimes, she would introduce me and say this is my daughter. I always said, when mom does not know me any longer, and is incontinent and wont listen to me, then it would be time for nursing home. The time came in April and she was there 10 weeks and passed on July 3. The disease is so hard sometimes to deal with. How do you explain to them that their things were not stolen but that they just do not remember where they put them. It was a never ending cycle. It becomes a very long day, when they can't entertain themselves. Looking back now, I see that mom was existing but not really living. I was lucky that mom never was violent. I just kept telling her we all loved her and she was a great lady. I miss her smiling face everyday!

I took care of my mother for 8 years and she had dementia. She did not get to the point that she did not know my siblings or I but her memory of my father did seem to wain and she too had been married for 60 years and was 85.

I know it may feel like a punch in the gut that she does not remember anyone but it is the disease progressing, and it is not her fault. Rationally we do know that but sometimes we lose sight of that and may even begin to believe in a way that it is their fault or that they are pretending. I was shocked to hear my older sister say in the hospital as our mother was dying that what a nurse had told her was true and she had never thought of it that way....she was told by the nurse that Mom could not help her actions, it was the progression of the disease. I thought to myself, "Oh my God how could you not realize that?" Her and my mother had a combative relationship and she would get to the point she was yelling and was then shocked that Mom would yell back at her...(who wouldn't?)

As far as how long can you take care of her at home....that will depend on you and how long you can handle her and the disease. I have a line of relatives that every single woman in that family has died of Alzheimers (scary!) and there are two who are still being cared for at home by their children who are in their 60's.

After caring for my Mom for 8 years, I became sick and developed panic and anxiety attacks; I was literally going out of my mind. I went to a hospital one night and was admitted for stress and told by two doctors that I could not return home to care for my mother unless I wanted to die of a heart attack or stroke. When they told me to turn to my 22 year old daughter and tell her goodbye now, I decided that I could no longer do this alone.

We hired an in home care giver for 8-12 hours a day but my older sister said it wasn't enough after just 4 months of her being responsible for Mom's care in the evenings and she wanted her placed in a nursing home.

I have to say that I had requested this myself 4 months earlier and both sisters told me NO! As a matter of fact this sister gave me 30 days to get over the panic and anxiety, fire the in home care giver and get back to caring for our mother! When I walked out the door and said I wasn't coming back anytime soon, I think they were in shock! After 4 months my older sister said she could no longer take care of Mom, the house and the property.....it was too hard and she just could not handle it! She had no concern whatsoever about me having to do it!

Anyway as pamstegman said, you MUST TAKE CARE OF YOURSELF, 30% OF CAREGIVERS DIE BEFORE THE PATIENT DOES DUE TO STRESS! Some will wind up committing suicide and I have to admit, it crossed my mind because I felt like I had failed and I saw this as my only way out. Those two doctors saved my life in the hospital by telling me to leave.

When it gets to the point that you can no longer handle the care then you need to place your Mom in a Skilled Nursing Facility who deals with Alzheimer's patients.
I do not want to scare anyone, but you need to be aware that in my search, there were no beds available at ANY homes in our area, so you need to begin a search now and check out each home and see what the availability of a room is.

You need to ask many questions of them, and unfortunately you need to keep constant watch on your parent in the nursing home to make sure they are not being abused or neglected. My mother could walk and talk and take care of her personal needs, but after just two weeks she sustained a mysterious "fall" and had a huge bruise on her forehead and back of her head. They did not take her to the hospital for 16 hours and did not call me until the following day. They kept telling me that she was fine and told me "Do not come to the nursing home, she is fine." She wasn't, it turned out that she had 4 hemorrhages of the brain, pneumonia, MRSA and broken ribs as well as bruises.....she died 9 days later.

I was getting ready to have a TV installed in her bedroom at the nursing home and something hit me that rather than the TV I should be installing a camera to keep an eye on her....it was too late.

What happened to my mother will never be known because they have lied to us numerous times since the fall, but everyone needs to keep an eye on their loved ones to protect them. I cannot tell you how many people I have met in the last month who have told me the same exact story!!! It is an ABUSE epidemic!

I know there are many good homes out there and all you can do is be as diligent as possible to find one and check on her every day or have a camera installed in her room to keep an eye on her and her care, get a nanny cam or leave a tape recorder there to hear what is happening....I SO WISH I HAD!!!!!!!

Listen to that small still voice within you and act accordingly. God Bless you and your family!!!

Stressed52, omg I am SO sorry for your loss! How dare they tell you not to come to see your Mom, sneaky no good jerks! This reinforces why my Mom is with me. I have interviewed over 100 CNA's and I have heard so many horror stories of why they now want to do private care and not work in a nursing home. Bless you !

My Mom is at home with caregivers and I am very nearby. I see her 3-4 times per week. I was there this week and she asked who was in a picture on the mantle (My Dad -her hubby of 52 yrs) I told her it was her hubby. She said I don't know him . Then I grabbed a photo of their wedding day and her face lit up and she said there he is-thats my honeybun!
it's a very strange disease but she truly has no idea. She does knows that she is surrounded by people that love her and she loves us. I have seen so much worse ways to exit this life. I pray for God's mercy and blessings everyday. Peace to everyone on this journey.

How do you cope? One moment at a time. I had the pleasure of speaking to my mom on Tuesday this week and by Wednesday she was back to memory loss. I'm still reeling...... one moment at a time.

I've bee there with my grandmother, just remember it's the dementia that is robbing her of her memories and she has no control over that. It is difficult when our loved ones don't remember us. Just remember her as she was and find help to take care of her now. As the above posting, contact your local Area Agency on Aging or Bureau of Senior Services they can inform you of options for your mother's care which includes home and community based services. They should also have a caregiver program that includes a caregiver support group. Dementia robs us of our loved ones twice: one when there mind goes and then again when the body passes on. You may see moments of clarity until the disease finally takes away that ability.

It sure hurts when you come to realize that a parent doesn't remember the family. I'm finding it with my dad now. The way I handle it is I don't ask him do you know who this is? I don't want him to feel inferior because he doesn't remember. If I show him a picture, I don't say "do you know who this is"? I say look, here's a picture of you, Joe, Bob etc. I feel that I'm robbing him of his dignity by asking. It may sound stupid to some, but it helps me with dad and I feel that he may have lost his memory, but he still has his dignity. I never get upset with him when he can't remember. I keep telling myself that he can't help it and how would I feel if I was in his position?

The nursing home I placed mom in called me for everything. If she was holding hands with someone they called and asked if that was okay. Because my mom was a pacer and I mean never sitting down, it was a safe place for her to roam. I guess had she been bed ridden it would have been different. I really could not of handled the very end, it was just to devastating. As much as I hated leaving her at the NH, I needed time to let go. You are so connected as a caregiver and the mother child bond is so strong. You are never ready to say goodbye to your dear parent. You have to remember that you have to carry on without them, so you have to take care of you.

One day my mother said, "No, you are not my daughter. Not my little Laura." And all I could do was laugh because in actuality, I don't look like I did when I was a baby or a teenager or even a young adult. I have put on a bit of weight, well, more than a bit, and I DO look different than I used to. Right now, her mental age is younger than mine, so I seem like the older person in the room. And that being said, it would seem impossible for her to have a daughter who is older than she is! Yes, it is sad, but shifting your perspective to what your father's perspective might be could help alleviate some of the pain. Good luck.