Someone started a thread about what we miss today: A shoulder to cry on instead of a computer.
My FIL's funeral was today. It was hard on hb for many reasons and this is when I am thankful he won't remember it all. When they were playing a recording of "how great thou Art' he went up to the casket and grabbed his dad's hand. Eventually his sister went up and joined,then his brother. He kissed his dad as he left - I had never seen him kiss his dad in all our years of marriage. Everyone there called him Sonny, not Arthur, but the pastor for some reason used Arthur in the service. Since my hb is a Jr every time he said 'Arthur' I felt like he was doing my hb's funeral. There was abundance of grandkids and nephews that wanted to be pallbearers so Walter told them they could and Art was to walk in front of the casket. He was so confused/disorientated the funeral director led him both to the hearst and to the burial site. His dad was in the Army so the color guard were there. Being the oldest child both of us were expecting Art to receive the flag but his brother had arranged for him to get it. We would not have kept it cause we have no where to store it but my hb still should have, despite his brother being executor of the estate cause he was the only one living there when their mom died in 2001.
At the end hb lost it again, ran up to the casket and knelt. Everyone had left except kids, grandkids & great-grandkids. I was getting ready to go up and get him when his sister went up and then brother. They cried with him a while then literally pulled him away. We stayed until they lowered the casket and put the cover on cause as he did at his mom's he wanted to put the first shovel of dirt in. Actually I asked if he wanted to as he did at his mom's funeral - he said i did? yes I want to then. As we entered the cemetery I discovered he doesn't remember some stuff from back then - 2001. First forgotten was that their burial spot was on a hill. We visited in 2003 and 2006, so he had been there more than once.
His brother shared just before the funeral that he fears he is next because he is having memory problems. I told him it could be the stress but he needs to follow up on it. then we were interrupted before I found out more. So here I am looking at a younger sister that is probably stage 5/6, a big brother stage 4 maybe some 5, a middle child starting to show signs; spoke with one of his sister's daughters, hb's godchild, and asked if they worry and they are terrified for herself and her boys. She said her sister is for herself and her daughter too. they all want to get genetic testing to find out if there is a gene that they all carry and so will know. Here I am looking at a family burying a father who died of Alzheimer's, a sister, brother who have it, a brother possibly and grandchildren terrified they will be victims too. This is when I am now thankful we never had biological children that we could have passed this curse on to.
As we were driving to his aunt's afterward to eat, it was the first time he talked of wanting to die and not go thru the whole disease. He wants to die when he can't have a real life anymore or remember who I am. I said he will be like my mom who always said when she starts to forget like her mom, she will kill herself - only problem 'she forgot'. He said he wants me to remind him to kill himself. I told him I couldn't because I would be charged as an accessory to murder and changed the conversation.
It is almost midnight now and he is sleeping. I finally got him to go to bed about 10:30 ever though he was tired.
I HATE THIS DISEASE.
On a light note: it was amusing to watch him and his sister interact. He could pull his childish humor on her and she didn't mind. They could bug each other, repeat all they wanted cause they both would quickly forget.
Oh, FIL had 5 siblings: 4 sisters, 1 brother. Besides his dad having AD and aunts and uncles, 3 sisters and his brother died of AD. There has got to be a gene somewhere in there causing it one would think.
Charlotte,how sad and touching your husbands reactions at the funeral.Tears ran down my face as I read it. You were certainly crying on my shoulder.I bet everyone else felt the same as me. So nice to hace computer friends. At my MIL funeral my DH laughed ,I coudn't get him to stop,all his cousins were horrifed,so no one has spoken to us since then{ 4yrs.}but I already knew then he was getting AZ and that's the way he reacted to anything stressfulI didn't try to explain to any of them.AZ destroys families,inmore way than one.A horrible disease.
Alz only destroys families if you allow it to...It also can bring families closer together, and build stonger ties to one another. I also thought alz destoyed families, but it has shown me that my daughter, son, brother, and mom became so much closer in the process.....Gosh I love them all..
My family has become closer because of this awful disease too. Our children have shown me how truly supportive they can and will be for us as we travel this road of AD. My DH has gotten closer to my mother, and she has been there for both of us to give her support. But it has also made us closer to his sisters and father. In the beginning I thought it would tear us all apart...but as time goes by, I've noticed that I have been able to reach out to family more, thus bringing us all closer.
Charlotte, your experience sounds very touching. How awful for the rest of Art's family to have to worry about their having AD. I can understand someone wanting to be tested for the gene if she was thinking of having children. Otherwise, I wonder what the point would be.
Phranque, you, and the others like you (with strong family ties) are MOST BLESSED. But, this disease DOES destroy some families. They don't understand the process of the illness, the 'caregiver' is at fault, somehow (I still don't understand the logic). So many dynamics influence their behavior/acceptance/understanding. Our marriage wasn't a happy one, though there were some great sunny spots...and I KNOW I took good care of our children - was a faithful and supportive wife. I know that my step-children have their own "issues" with their dad, especially the oldest two, that I know nothing about....before my time. I remember John's sisters coming to visit for two days to see for themselves what I was talking about after I was sure of John's diagnosis. They announced to me that nothing was wrong with their brother.....Jack was just depressed. I should get him to see a doctor about it!!! Then, they went shopping. No one has been to visit thier father except the two daughters that are relatively nearby (within 2-3 hours). The others haven't seen him in YEARS (except for a recent crisis that brought them here.....and I wasn't allowed in the same room. Wierd). Everyone STILL thinks I've absconded with all his money, and for all I know, thats the sole reason Im shunned. My youngest daughter is the only one I can talk to about their dad.....she transfers info to the rest of them for me. And, they don't understand or accept the concept of "comfort care" that John is now on....even though they've talked to his health care providers. Now, the children are angry about the plans I have made for when he passes. Immediate transport to the funeral home and cremation. That way, I won't incur expenses such as embalming, etc., and they can plan a memorial service at their convenience. NOPE. They want him prepared, transported back home, a nice traditional funeral. I HAVE NO FUNDS FOR THAT! Daughter says that everyone could "chip in" and pay for it, that I shouldn't worry so much about money. I asked her to tell the others to arrange that and then show me the contract from the funeral home that would be handling ALL the details of that operation. No word has been forthcoming as yet. So, its one thing after another and I let it run off my back, like a duck. It used to break my heart. Not anymore. It just is what it is. Yes, this family was falling apart already, but Alzheimer's Disease has been the hammer that has smashed the remnants of caring and the ties between us all. YOU AND THE OTHERS LIKE YOU ARE BLESSED!
Frank, your children are a testament to what a great Dad you are. How you have managed to be a caregiver to Audrey, your Mom, Murray, run 2 businesses, be an awesome Grandpa, loving involved Dad AND keep us all amused is truly a testament to your strong Christian lifestyle and the strength that God provides to you. I am proud to be your friend.
Jen, I know only too well, what it is like to have no money and little family support. Faith, my friend, have faith. There is more in life than money. Try to remember that. Let Go and Let God. If the kids want a traditional funeral, let them pay for it, simple. You need to surround yourself with those who care. I know I can count on my Mom, she is a widow and truly understands a lot of what I feel. I have friends who are 2 1/2 hrs away, who care, but are busy with their lives. They try, but I need more than they can give. I am trying to get involved with more community stuff, in an attempt to make some friends in the area. After caregiving, I've found myself without local friends, something I now find myself missing. The community center in the next town. They need someone to volunteer on Thursday & Fridays, answering phones. They have tons of programs, Now I Just Have to Get MY Back Better.
Yep, we all need to stay well, physically. That's something a lot of us have in common.....painful illnesses or health issues. I think the daily grind of physical pain combined with the stress of all that ALZ deals us ...and family issues, financial woes....just wears you down. I KNOW I'd be doing better (more consistently) if I were in less pain and could do what I needed to without that annoyance and fear.
As I read your story Charlotte, I think of my husband's family. I don't know if his grandparents or aunts and uncles had it but both his parents died from Alzheimer's and now my husband is at stage 6 at 66 years of age. His sister recently had an MRI for other reasons and she was extremely worried. Thank God it doesn't show that she has anything. I don't know about his brother. My husband's two boys are at risk and it wouldn't surprise me if they had it. I hate this disease too but I won't let it kill me or the rest of my family. It has taken too many already and we need to enjoy life. Each of us as one life and we should make the best of it and be as happy as we can it it. Even my husband is happy in his own little world.
Charlotte: God Bless You and many thanks for posting your feelings and experiences. I never cease to be amazed how those of us on this web site can relate to one anothers feelings and exeriences.
What I meant by it destroys families is by this disease taking them one by one.
A reason for knowing if you have a greater chance is planning. These girls are 10 -15 years away from the age their mom, uncle and grandfather developed the disease. One has a 6 year old daughter the other two boys 14, 16. These boys have grown up fast helping with their grandmother. First we would need to have my hb and his sister tested to see if there is a known gene associated with AD that both have. Then the daughters and their kids after they turn 18 and have had counseling. I see it as no different than people with Huntington disease in their family history or any other hereditary disease wanting to know if they carry the gene. I would want to plan. Hb's sister did not plan for AD and neither did we -mostly. We did know it was possible and that was behind our move to go fulltime and Workamp early on. Unfortunately because we felt we were to stay and help my sister after her hb had a stroke (cause her son bailed on her), we lost 2+ years of living our dream.
Knowing doesn't mean you stop living, it means you start living more than ever. And with some researches concentrating on drugs to give to those who carry the genes before symptoms ever show, if they should find what works, then his nieces kids, if carrying the gene, could take the drugs to ward off the disease.
BUT - there needs to be a way to keep the health insurance companies from finding out. Supposedly in that national health care bill, there is suppose to be something in there that prevents insurance companies from using the information to refuse coverage.
Jeanette: I am mixed on whether I am glad i came. For the most part I wish we had not. Yesterday was extremely exhausting. It was nice to have seen his sister and her daughters, but I as so ticked by his brother's continued 'superior' attitude over his siblings. It still ticks me the way he stabbed his brother with the flag. I was thinking as I wrote this if he is in the early stages of AD, what a blow to his ego that will be to become dependent on others.
Charlotte---It occurred to me that his brother might have been unsure how well your DH could handle things and had the flag handled that way because he, was unsure. You said yourself, your DH handle some of the funeral activities well, but was confused at others.
Thank you Jeannette, carosi, and Bama - we did do something enjoyable. We drove to the NH beach and then went to the campground we worked in summer 2006. The weather was pleasant, no rain.