I have a wonderful friend, a widow of several years, who is and has been my confidant, non-juegemental, accepting of anything, person . WE met initially in my husband's sunday school class where he was the teacher for adults. She and her husband Bobby, were part of the classs but I had very little in common with her, therefore, we did not socialize past class functions. After mry husband became ill, and after his placement in the NH, I was very lonely. Pat and I began to go shopping, go to lunch, with each other. We talked often over the phone, and gradually our friendship deepened into a close buddy one.
She is invaluable to me; I have Parkinson's and she helps me to function somewhat normally in public. She helps me get in her car which she drives us most places,she carried my purchases, she puts gas in my car, she is unobtrusive but is always alert to help me get dressed, . We have such fun together and she knows my grief as it surfaces inexplicably , giving my space to confide and rant and rave.
Now that my husband is gone completely, my friend Pat, is douly important to my life. I am thankful I have her for a friend and I hope you can find a Pat for your life to help you through this ordeal of Alzheimers.
When I was working and had kids at home, I used to look at some of the older women in church who were friends, did a lot together and supported one another, and think how wonderful it was that they had such close friends. I especially watched those who were widowed. Many of these women had long histories together. At the time I had what I called "situational acquaintances/friends." These were the people I was in church groups with, the parents of my sons' friends - music boosters, PTO members, etc., and the people my husband and I worked with, but they weren't people I interacted with outside of a particular area of interest, and except for those from church, they weren't people I would ask for help. I also had a few friends from college I stayed in touch with, but they were all far away.
When I thought about retirement and what I wanted to do, one of my primary goals was to make really close women friends like those I watched when I was younger. My husband was diagnosed with MCI about four months after I retired. In the year and a half since then, I've gotten closer to several women I already knew. Some are women I worked with, but now we do other things together. Sherry, in particular, makes sure we get together for lunch, a drink, or to go to an estate sale or auction about once a week. She's very busy, but she always has time to talk and to listen to me and to help if I ask. Actually, she often offers help when I don't expect it. I haven't needed help with my husband yet, but I will and know Sherry will be there. She even helped us clean out my sister's house - which went way beyond what anyone would expect even the closest friend to do (see the thread My Week - Venting for more about this). I have other friends now whom I know would help if I asked. They also offered to help deal with my sister's house, but were not as insistent as Sherry was! I also am making new friends through our early memory loss support group. We've been talking about doing things other than just the group meetings - like Joan's group does. I'm excited about that!
I think we sometimes forget how important friends are - not just to help us but to allow us to help them. I also think that sometimes we don't have close friends because we don't want to admit we need help. We try to be self-sufficient and we miss out on a lot that way. What I liked about Joan's blog was the reflexive giving and taking she wrote about.
Since moving here to Jax..from Clearwater, we left all our friends behind, I know if we were there, I would have pleanty of help. It was necessary to move here to be closer to our girls, and grand-daughters. Our oldest Daughter Laura, left her job, teaching a the University, in order to be available to help me...She being the oldest of 5 children, has Always been my right hand, now I tell her she is also my left. She is there for me, no matter when, she has a special way with her Father. evem though he doesn't know who she is...I am truly blessed Joan, you are lucky to belong to such a special support group...I get most of my support from this web-sit....Thanks to You....Rosalie
i have always said my sis in law has been one of my closest friends for yrs. her dear departed husband my brother in law passed 2 yrs ago in july. he was very good to Dh and came to visit often along with sis in law. we were quite the foursome while it lasted =brother in law became quite ill with CHF and passed and i think my DH and I kept my sisinlaw sane during that first yr. she was quite suicidal-she stayed here with us on many occasions and us at her house over weekends. i held her hand by phone and in person many a nite-it lasted almost the 2yrs then she found a new love and now she has a new life and rarely calls -and excuses to come visit because of her animals now. its so strange how being best friends can disintegrate rapidly. we still talk but not like before. funny when the need is there and you are there for your friends the shoe somehow gets dropped when its on the other foot. divvi
I have the most wonderful SIL who is also my friend. She is DH's sister and we met in 1957, before I ever met DH. I have a plaque on my office wall that says 'Sister-in-law by chance, friend by choice" that she sent me years ago. We have always been close and this disease has made us even closer. Although she lives 100 miles away, she comes here to visit us as often as she can, and gives me a break to go out to do whatever. We also talk on the phone at least twice a week. I could not ask for a better friend. Tonight DH, who thinks we are newlyweds, (this is our 48th year of marriage) asked me how we met. I told him his sister brought me home to meet him. He liked that and says he will thank her.
Divvi, I wish I could find the poem I've seen on this topic, but I cannot. It tells how different people come into and go out of our lives for a reason, or a season, or maybe just a moment, etc. How some are here forever and some not so long. It's really a very comforting bit of prose. Perhaps someone else on this site will have a copy. It was circulating through emails not so long ago.
My husband is 62, I am 58, just had to take Family Leave as it was difficult to be out the door at 6:30 AM, after toileting him continually, feed him, shower, shave, dress him and have a paid neighbor sit with him until his Day-Care bus arrived at 8 AM. I think I could have handled it, but I work as a nurse in a Psych Facility, and take care of very mentally ill people, and it drains me. I am very disappointed with friends and close family. Friends do not call- except when finally, after three months, they ask how my husband is. Now, I just say, fine, because when I did tell them his impairment, they changed the subject. Children are busy with their own lives, and no one realizes I am isolated, no dining out any more, no movies, no outings, as I do not wish to pull him and lead him or struggle to get his heavy wheel chair out of my car, then feed him his food. I am 4'10", weigh 115, my husband is 200 lbs, and my friends or family do not realize how hard it is to shower or struggle with a heavy wheel chair in and out of the car- then push him? Piece, by piece, my life is ending also. Does anyone say, do you need new wipers on your car, do you need any little thing done? My husband ALWAYS did everything- and everything for everyone else- now I pay a handyman. I never just talk about my husband- I always ask how their family are, and am there for them. Sitting alone while he sleeps all the time that he is not in his school is difficult, as I can't leave him alone. Alzheimers can hit anyone, anytime, and steal their entire life, piece by piece. I know that if any illness ever invaded my friends or family, I would be there- emotionally, with surprise meals, and most of all, just to visit, as we really do need adult conversation. I am fighting to remain strong, alone, but would like the nerve to tell these few people, "shame on you, for forgetting us, and we never forgot you." Yes, I am angry and hurt that no one cares or realizes what this dreadful disease does- piece by piece everything is taken away.
ckkgram, go to the topic SLAP FEST and let them have it bigtime. that is what that topic is for. cyber fights, telling off family/friends where to go:) it is good to get it out! i will bring it up for you. divvi
ckkgram, I'm so sorry that people are unfeeling. I don't know how you can possibly manage the way you are! I hope you're still getting him out to day care. My husband's not quite in a wheelchair, just a walker and sitting, and we're physically about matched, but I'm in my 70s and it's not easy to shift him from place to place. Mine is here 24/7 unless we go out for a ride which of course takes hours of time to manage!
It's not exactly a poem, but this is the essay to which you may be referring:
"We can have friends for a reason, friends for a season, and friends for a lifetime.
I used to think that only lifetime friends were valuable. That the reason and season friends were not true friends. But now I think that God sends us all three kinds of friends, and that they are all equally valuable, and can all make lasting impressions on our lives.
When dementia of any kind enters our lives, we sometimes lose friends that we thought would be lifetime friends, or at least they drift away and aren't as connected. Then we may need to look around and find friends that may enter our lives only for a specific reason, or might be friends for just a season. I have new friends that I have very little in common with, except for dealing with dementia. There is a good chance that after we have dealt with dementia to the end, our friendship will end, because we will no longer have a common bond. That is ok. We were there for each other when we needed it the most. We may find friends that enter our lives for a specific reason - a piece of extraordinary advice, a referral to a valuable resource, companionship for a certain period of time. They may come into and go from our lives quickly, but their importance in our lives cannot be discounted."
Yes, Joan, that is what I was looking for. The version I read did not mention dementia but the gist of the message was the same. Thank you for finding it.
ckkgram sorry for all you are going through. Have you checked out a transport chair to use while out. I keep mine in the car trunk and it is much lighter weight than a wheelchair and does the same thing except the patient cannot push himself. I could not manage the wheelchair and I am 5'3" and much heavier than you. (we won't elaborate on the weight)
My friends from Florida just left. They had come up to NY to spend time with thier kids and grandies and made time to spend with us. they spent 2 nights here and it was delightful. We still vacation with these wonderful people, and I cannot say enough about both of them, but particularly the husband. Just yesterday, before they left, we were having lunch at a restaurant with another couple (who are also wonderfu) and DH got up to go to the restroom. Stan immediately got up and followed to ensure that he had gotten to the bathroom safely. he didn't go in, just followed to make sure. Several minutes later, he got up, ostensably to ask for the check, but in reality to check on DH, make sure he hadn't wondered out. With friends like these two couples, I feel as though I still have some sort of social life. I truly consider myself fortunate. BTW, one of these couples is currenly dealing with 2 sisters of the wife being stricken with AD. Yes, Weejun, friends for a sason, reason and lifetime.
ckkgram--I hear you loud and clear. We are close to your and your husband's ages--I am 60, he is 64. Since day one of this experience, I have been disappointed at most people's reactions to my husband's disease. I think that generally, there is a lack of understanding about what AD does to the caregiver's life and also about the disease itself. I had a surreal conversation with a "close" relative who compared it to a friend's husband who has cancer. She said something to the effect that it's hard for people to realize it is as serious as cancer. I was astonished--reminded her that it is terminal. Then she said something about the fact that my husband looks healthy, and that is the reason for the lack of empathy.
I also have been told at least it is not cancer. Don't the public know Alzheimers lasts longer sometimes. Today, I scheduled a handyman to install two new toilet seats I had purchased- he did not show up, was supposed to be here early morning. I called him and he said he was at another job. I mentioned it to my brother and he told me just do it yourself, it's easy. Well I cannot do it myself, I can do most things, but cannot unscrew the bolts. My husband was a plumbing contractor, builder, could do anything- how I miss him. I felt so alone, I cried and cried, wiped my tears and went to get an oil change. I called my executive son, and asked him why he never asks me if I may need anything- his response was, well you never ask. My husband and I always have been there for children, relatives , etc., and now they have zero clue or wish to know our life. I absolutely hate being alone. I miss my sweet husband- even though he is here as my sweet 100% disabled child now.
ckkgram, our children ask us for help, money, borrow something all the time so maybe it is a mindset, if they don't ask they don't need anything. So, I suggest you start asking. I ask all the time. Sorry but I do. This morning I called son in law to see if he could come over and oversee the backhoe cleaning out our drain. He said, sure Mom. This evening I called and told him the backhoe man was putting in a catch basin in the morning and it was hard to do by himself. I called SIL again and he will be over here in the morning. Of course, he is not on a regular job because he is disabled with back problems so he is paid help for me which I insisted on. He always says, Mom call me if you need me. He is limited in what he can do because of his back and is on pain killers most of the time but he will not stay still. Son lives out of state and would not be that helpful. Other son in law will come when I ask him but not volunteer. I don't hesitate to call either of them. I am good to them. Daughters are into more volunteering then sons. If I need help from one of them I will call and they will come as soon as they can. But, most of the time you have to ask.
It is hard for most people to ASK for help. I have always, until 6 years ago had employees working for me in our business and that is where I learned to ask people or in their case tell them because you seldom get a volunteer.
ckkgram--No, the public doesn't know much about AD. To me the misconceptions are mostly because it usually strikes the elderly, so they think the individual died because they were old, not because of complications from the disease. I have had some well-educated friends make comments that they didn't know Steve would die from this. You should see the reactions of surprise when I talk about planning to put a handicapped bathroom in and moving the bed to the first floor of our house, because he eventually won't be able to climb steps. Most people haven't a clue.
I am interested to know whether more of you have found new "seasonal" friends via the Alz support groups, as Joan has. I was much heartened by your blog about those new friends, Joan, but so far have not found any. We have an "Alzheimer Cafe" here, it is a monthly evening open to anyone: patients, spouses, children, friends. There is casual conversation time, a theme usually in the form of a talk or interview, and then discussion. In my village it is new, this was the first season. The information was especially valuable in the beginning, but the main reason I have been going is to make acquantance with fellow spouses, and I have met and talked to a few, I'm getting to know the regulars, but have so far not found anyone to socialize with. I'm not complaining, enough of our friends have remained true, some are wonderful and I'm not lonely yet. But "we" are only stage 4 and I can get out to swim and visit friends briefly a couple times a week. I know that won't be forever and later on it will be harder to socialize. Thank heavens for internet and this site!
I started going to the local Alz support group meeting a couple months ago and 3/4 of the attendees were men and/or ALZ. widows and widowers. I also was hoping to find some women in the same position as myself.