I think that what has enraged me most reading these threads is the loss of community support I see people receiving from friends, family and church. I read about people who disappear only to reappear after death of our loved one. I clench my fist and mutter to myself. I am bound and determined that this is not going to happen to me.
I’ll share some of the things I have done and am currently doing. But just as importantly I want to know what others are doing. Us caregivers are just too nice sometimes. I have always viewed myself as a nice person. I pretty much am nice, but I am determined not to fall off the radar of people who know us and have loved us in the past. So now my determination is outweighing niceness. Because We can fall to pieces without support. We are here, world, and we will not/must not be neglected.
Lindylou I think you are on the right track. Sometimes CG are so overwhelmed they can't sort things out. Waiting for help won't work. My thought is that if you start asking for help early on and people get used to your loved one they won't be as frightened later on. Develop a list of people who will help so you don't have to rely on just one person. A friend developed a long list so she didn't have to ask just one person too often.
I started a year and a half ago. My partner's forgetfulness was increasing exponentially, but she could be left alone for several hours at a time. I joined a ladies group at church and said, “You are going to be my support group.” We have a check in time at the start of each meeting, and everyone gets to share. During that time I do two things. I share, I have to, for the two minutes or so I have, then I thank the group, and the church for being so welcoming to my partner. I tell them how grateful I am that when I walk around during coffee social, folks notice and go sit next to my partner and talk with her. And I say how wonderful this church is for being so inclusive even to those with dementia. I do these things each time. And I believe that if you tell people how great they are, they will want to continue to be great. So far this has worked.
Can’t go to the ladies group any more, but that is another story.
A couple in our church kept asking me to call on them if I needed any help. This was really no help, since I had no idea what they could do. Then one day they asked if they could take care of my wife while I went to a church meeting. From then on for a couple of years they took care of her once a month when I was at the meeting. Several times, when I went to pick her up after the meeting (which ended at 6:00 PM), they would have dinner waiting for us. If people want to help, they should suggest what they would be able, and comfortable, doing.
I don't know, Lindylou. It seems to me that in most cases, if you announce to acquaintances that they are going to be your support group, they will say all the conventional, proper things, but I'm not sure how much they will actually do. As long as Larry could participate in social occasions and activities...albeit with a certain amount of ditsyness and forgetfulness...people were pleasantly supportive. When it just became clear that these things were too much for him, we pulled back and just socialized with family--which had always been important to him anyway. Church worked well for a long time, because of course a Catholic Mass is always the same pretty much--even if you're not in your own church. Religion and family were probably the two most important things in his life, so we found a lot of support there, just leading a sort of routine Catholic family life, when the family was still big on both sides. (We had huge losses in numbers over the years through deaths.) Personally, when people start to fade away, back off, and shun the Alzheimers patient, I think I would just let them go. My feeling is that if you have to push too hard and "make" people be supportive, it isn't worth it. Who needs that kind of "help" anyway? I do think that some tactful education of the people around you could possibly get you some support if they can come to realize what Alzheimers is all about, and how devastating it is to patients and caregivers...but maybe not. Don't forget, you're getting into long term issues of the mind going, inappropriate behaviors that need certain skills in handling them, gradual impaired mobility...again, certain skills are needed to deal with someone who is using walkers and wheelchairs and falling...and of course the big one, the incontinence...particularly adult fecal incontinence. People just don't want to deal with that. The same person who is an angel in assisting the 30-year-old, sharp neighbor who fell off his roof and broke his leg...is going to run like a rat deserting a sinking ship from...let's say...the neighbor on the other side who is 70 years old and has Alzheimers.
My Hospice volunteer was essentially worthless to me because she couldn't really do anything that Larry needed. She could sit and visit with him, but he wanted to go to the bathroom a lot, and she couldn't help with that. He was so demented that he couldn't really carry on a conversation with her. I was supposed to be able to get out and take a walk in the park while she was there, but she insisted I take my cell phone with me so she could call me to come back if he needed anything. She was clearly uncomfortable with Alzheimers, and practically wanted me to stay there holding her hand. What kind of break is that? Good Lord, she couldn't spend 45" with him so I could take a walk in peace. Maybe she could deal with an alert, oriented cancer patient, but she was rubbish with an Alzheimers client. And I think that's the kind of thing you're going to get into, Lindylou, if you have not already.
I truly hope your experience Lindylou is not what is a strong theme on this site.
Well said elizabeth. So true.
I didn't have a church community but know from others this can be very helpful.
As Duncan steadily declined, friends became too uncomfortable with the changing and sometimes aggressive behaviours. In the early days, our best friends tried to support us but when I look back I think they simply got too exhausted. In all honesty, I probably would have had the same reaction. People have their own lives with their own issues and challenging dealings with Alzheimer/dementia folks and their spouses can simply be something they don't want to take on. We lost those friends and others.
I too was a mess as things kept getting worse and worse. I was anxious, afraid, and in a nutshell lost my life to dementia.
In the early days, we stopped having dinner parties as Duncan couldn't keep up with the conversations and got frustrated and guests were embarrassed. We stopped going to people's homes for the same reason. I was often on the receiving end of Duncan's agitation and frustration and staying home was safer for both of us.
The other thing that happened even after Duncan went into a facility, is I knew it important to try and keep up some social connections. However, I was so fully worn out and my reserves were barely more than empty. The facility was really challenged with Duncan and I was a strong advocate for him. This too was exhausting although I wouldn't change my role there.
However, the few times I booked something like going for dinner and a play with a few friends, every single time, that day there was a big issue with Duncan. That did it, I had no energy to go out. Invitations stopped coming.
Now that my husband died less than two weeks ago I am fully immersed in the most extreme exhaustion I have known. Joan and others wrote about this following the death of their spouse. Debilitating.
I hope in time I will gain some energy back to enjoy social interactions. I am one of the people that wrote about friends coming forward after the death. Others from here had great feedback for me on that. Right now, I can't connect with those folks. Even though there may be solid reasons they "abandoned" me I feel I can't trust to just pick up and resume. And I don't have the energy.
katherinecs, During his illness, I had the support of my church community but no one really stepped forward to help me. My kids helped especially at the end. I was one of these people who had a lot of pride thinking that I did not want to bother people or ask for help. Big mistake. I did have a caregiver at home and I did put him in respite before I placed him but no one really offered to volunteer anything. Yes the exhaustion after the death is overwhelming. I was literally numb for 3 months. I was able to function but absolutely numb. Hospice came out twice to my house and encouraged me telling me I was doing really well. Except that I did not feel like I was. I attended a hospice 6-week bereavement group in the fall and am just finishing up another one at my church. I met some new people and have actually forged a couple new relationships, but it took a while. My husband was ill for so long that we really did not have a lot of couple friends. Most of my friends before he passed have abandoned ship and I knew I would need to make some new ones. That has happened very slowly and gradually. Just focus on you now and resting and eating well. If you had hospice at the end, get in touch with them. They really do offer wonderful support groups for people who have lost a loved one. God bless and I am so glad it is over for you now.
My needs. My partners needs. Both real. Both pressing. Without the daycare that the PACE program provides,I would be a basket case by now. And I don’t even have incontinence issues yet. But with her increasing inability to find the bathroom and to recognize the toilet I know this is coming. Right now she is saying I need help and I have to guess, then take her to bathroom and help. Pretty soon she won’t be able to ask me. I’ll guess when its time, I won’t always get it right.
I see this disease eating up my new friends on this website from the inside out. And my heart is breaking for you. But at the same time I am screaming inside Not me. No no no. I can’t let it happen, I won’t let it happen. I can care for my partner and not be destroyed. There has to be a way.
Right now, I can’t get out evenings after supper. Ever. With or without my partner.
I am going to do my darndest to draft the people I need in my life and the people my partner needs in her life. I am realistic enough to realize that friends and most family members cannot be expected to be involved in personal care.
I am going to find friends to come share a meal with us here. Not the same friends each time. Once a week or so. I will explain to them that my partner and I may have to excuse ourselves for 10 minutes, even in the middle of the meal, and they will be on their own for that short time. I will also explain that eating with a knife or other peculiar behavior is not anything my partner does intentionally. (although I do try to keep excess eating equipment away from her) And they will be able to see that she is enjoying their company. And I will tell them, it really is okay if she wanders a bit and brings them strange things like a a towel or pillow to enjoy. And I’ll try to make a date with them again in two or three months. So maybe no burnout.
I’m going to find friends to take walks with me, or help me to find clothes for my sons wedding, or teach me how to use makeup.(Guess what I haven’t used in over 30 years.) And I’ll promise to vent for only a short while. I’ll tell them I need socialization. I’ll ask if we can do this monthly, can we put our next date on the calendar. And I’ll thank them, thank them, thank them.
And one way or another my partner's son, 45 minutes away, will visit.
I’m planning on checking my pride at the door and being totally shameless. I'm going to initiate contact. And if people ask what I need, I will have an answer and a calendar ready.
Hmmmm. You have some good ideas there, Lindylou. Let us know how all that works out. I've been trying to think back to what I did. I think it boiled down to a lot of family involvement and socialization, after he could no longer really keep up with our friends. We did both have big families, although they've died off over the years on both sides. And when it got to the point where I just couldn't leave him during the day, I hired aides. I had always made sure that we could live on my income alone, figuring that at some point I might need to use his income to take care of him--and that's exactly what happened. As time went by, he pretty much just liked to sleep late and then watch TV all day. He needed the aide to make sure his personal care was done and that he got his meals...and just to supervise his safety.
It takes a LOT of energy to herd sheep. Border collies have it and bulldogs don't. Lindylou, if you have boundless energy then your plan may work for you. I found that my spouse required so much of my energy that I didn't have any left over for managing the rest of the world. I had to let go of trying to control anything and just save myself. In fact, one of the major lessons I have learned is that I don't have control of anything. Realizing that forced me to be more flexible, more in the moment, and bend, bend bend. It was the only way to keep from breaking.
I am much further along than you, and while I did lose many friends from the fallout of AD, I have gained others who are more suited to who I have become. I think I see deeper into souls now than I could before. My BS meter is fine-tuned while at the same time I feel others' anguish and pain more acutely. It is an evolution and not altogether bad. But you have to allow it to happen. For me that came by giving up trying to manage the rest of the world and allowing myself to survive. I guess I dog-paddled a lot, but I did get to look around and figure out in which direction was shore, because in the end, I was the only one swimming.
Good luck, Lindylou. My wife and I had friends before her dementia came on, and I've been able to keep several of them. The rest... It's not that they've abandoned us, but rather that they have their own lives to lead, and I don't have the time to keep up the way I used to, and so we've drifted apart. If you have the determination and energy to bring in friends and community members for support, even if they're not volunteering, good for you!
My previous post might have sounded like I was supporting us financially. No, not at all. We had fairly equal incomes, and while we were both financially conservative, we still just threw everything into the pot and shared and shared alike...certainly had decent cars, fun lifestyle, ate out, travelled, etc. What I meant was that I always was careful to have enough of my own income to support us both if I needed to: i.e. if his income was needed for his health care costs, I could still run the household on my checks. That was one big reason I always worked full-time, and didn't quit my job or go part-time. It turned out to be a wise decision, because I was pretty sure the big age difference would bite us in the toe sooner or later...and it did.
Lindylou, I think you've made a big contribution by pointing out that lack of socialization (whether it is caused by others' abandoning us or own inability to participate in social life) is a big part of the suffering we endure. If I had know that this would be a major factor I might have built something into my schedule that forced me to get more socialization.
I think the main value of the Alzheimer's support group I went to once a month was not support at all, but was as a place to be among people who were willing to sit together for a while. When my husband was at home we had some relatives who stopped by a couple of times for meals and although I enjoyed visiting with them, frankly, it did not help that much because what I needed was to get out of the Alzheimer's cave. I also started applying a cost-benefit analysis to social opportunities. For example, I stopped attending garden club meetings because I did not enjoy them that much and it cost so much to hire an aide for the evening. Now I realize I should have gone to the meetings, just to be around other people. I did meet my girlfriends for dinner once every couple of months. We always chose a venue not too far from our house, so I could get home fast if the aide called.
After my husband went into LTC, I looked forward to getting more of a life back but that was harder than I thought. By that time, people had kind of forgotten about me and I had fallen into the habits of solitude. Strangely, I am reminded of a line from Nathaniel Hawthorne's, "The Scarlett Letter." "Shame, Despair, Solitude! These had been her teachers - stern and wild ones - and they had made her strong, but taught her much amiss."
Trying to think back to when and where everyone jumped ship on us. First we were EOAD. So most of the people we knew were younger with families of their own. Some of the grown kids and family just dropped away as soon as the AZ dx came. Others were never there to help they had full time jobs and kids of their own. We did have some friends who helped with DD and took her out to places we were no longer able to go to. Also we progressed so fast. I spent all my time playing catch-up it seemed. So for us, I never even had the help. Other than a few friends who supported me the best they could.
Our worst one was probably the year we asked his cousin and his wife up from NYC to spend Christmas with us. We were all good friends--we would visit back and forth frequently, and do holidays together, so it wasn't anything new or unusual. So they said why didn't we come down and spend Christmas with them. So I bought gifts, checked the train schedule, yadda-yadda. We were going down on Christmas Eve to spend the night and be there of course for Christmas Day and the whole gamut of festivities. So the phone rings Christmas Eve morning around 8 am, with his cousin saying that the wife was ill, and they wanted to cancel us. Using New Year's as the get-together weekend wouldn't work either, as they were leaving Dec. 26 for their Florida condo.
Even demented Larry commented that it sounded like a bunch of baloney. So I donated the gifts to the Goodwill, and Larry and I, frankly, had a quiet, pleasant Christmas just the two of us at home. I honestly think we had a nicer time than if we had gone down to be with the cousin and his family in Midtown and done the whole big celebration thing. Needless to say, I had nothing to do with them after that...couldn't prove anything of course...but I knew in my heart we got dumped because of Larry's increasing dementia.
Lindylou, I have been thinking some more about my experience. I totally agree with Marche that I too was too exhausted to be entertaining people in my home for the purpose of socialization despite the fact that I knew I was in desperate need of it. Here the Alz assoc had an early stage group that we were in together for 3 years where they put the caregivers in one room and the patients in the other. That was a godsend now as I look back. It was an opportunity to sit with people in the same situation and not feel so alone. When it started to get bad I hired a caregiver to come once a week and take him out since my job was at home. They would go grocery shopping for me and that was a huge help. My family was always supportive and they would take him if asked but I knew they had their own lives so it was easier to hire help as Elizabeth said. Once he was in assisted living it is not like I had a lot of extra time and honestly I was not really up to much socializing but it was easier in that I did not have the total 24-hour care. As Marche wisely stated it takes a lot of energy to herd sheep and when dealing with this disease one thing I learned was to do anything and everything I could to conserve as much energy as I possible could. We all know what happens to a car if it runs out of gas. I would always think of my energy as the gas tank on a car. I had to keep gas in order to keep moving. Yes I have lost friends primarily because I did not have the time or energy to put into the relationships and not so much because they left but since his passing I have gained a few new ones. Now I feel much more understanding of other widows in my church or single people who live alone. The one friend I made is single and lost her mother to the disease and my other friend has her husband placed in assisted living. I wish you the best
I have known for at least a year and a half that having people in my life helping me is going to be what keeps me from being destroyed by AD. With all your help, I've created a Support List which includes paraphrasing a lot of what you have shared. I've printed it. It is hanging on my refrigerator to read and remind me of what I need and how to get it. Here it is. It may need to be fine tuned as time goes on:
Waiting for support won’t work. (Bluedaze)
Start early to build a support network if you can - so people can get used to your loved one and won’t get frightened later on. (Bluedaze)
Make a list, of as many people as you can, so you are not dependent on any one person, and there is less likelihood for friend/family burnout. (Bluedaze)
Listen well, friends themselves may find a need they specifically can fill, (Marsh)
Have a list ready of things folks can do, so you are not caught off guard when someone asks if they can help. List may include socialization, errands, meals dropped off, caring for spouse of short while, help raking, etc. Maintain the list. List will be different for each person. List must change as needs change. (Lindylou)
A certain amount of energy must be found because finding/maintaining support is like herding sheep. (Marche) At times that energy may be very difficult, to find or maintain. Realize this. (Katherinecs) On the other hand, finding/claiming support may give, or help you maintain, more energy and decrease isolation.(Myrtle,Lindylou)
Tactfully educate your support people about Alzheimers and its impact on both your spouse and you, the caregiver. (Elizabeth) Some Alzheimer behaviors can be off-putting. (Elizabeth, Katherinecs) As part of this education, let you support people know your partner will change and that your needs will change over time. Down the road you may need different things. Reassure your friends that the last thing you want is for them to be put off or burned out. (Lindylou)
Check your pride at the door. Ask for help when you need it. (CO2)
If exhausted especially ask for help. Be specific. (Lindylou)
Paid help can make a difference if you can afford it.(Elizabeth)
Alzheimer support groups can be a godsend. (Myrtle and CO2)
Bear in mind that friends and neighbors for the most part cannot be involved in personal care. (Lindylou)
Know that in spite of everything, some friends will disappear. (RSA)
You can, though, make sure willing friends don’t disappear because they don’t know how to help, or simply forget to ask.
And new friends may appear if you keep your eyes out. (RSA)
Only vent for a short period of any visit.
Notice the small things and tell how much you appreciate it. Do a follow up call to say how your day or week went so much better because of their specific kindness. Put follow-up call on the calendar if necessary. Tell them you look forward to seeing them soon. Make a calendar date with them if possible and appropriate.
You have to have friends to begin with. Because of moving a lot and the years on the road traveling, we don't have close friends, friends that we hung out with. Even when we lived in a house in one place we had church friends, but not many that we hung out with outside of church. The few we do keep in contact with are too far away to be in the equation. Forget family too as they live too far away and am finding how little we mean to them if they can't get anything from me. Our son has seen his dad twice since returning from Oklahoma. In fairness he lives on the other side of the mountains but he can't tolerate more than a few minutes of repeating conversation with his dad. Our daughter has been in TN the last 10 years and has no plans to return any time soon.
So your ideas are good, just that for many of us they are not practical or possible. But for those who it is, I am happy that you have the support system.
Charlotte, you're right. To lose friends, you have to have them to begin with. I think you are in a similar position as Joan described herself as having been in, although for different reasons. Joan and Sid left their community and moved to Florida just before his symptoms took over, so they were never able to become part of a new community in Florida. I think MaryinPA experienced something similar when her husband retired although she has family to fill the gap. It's so hard to meet people when you get older and when someone in the family has Alzheimer's, that's just the kiss of death.
Although I'm not firmly tied to the area where I live, I would think twice about moving too far away at this stage, since most of my (very small) band of friends are in the same state. I can't imagine starting over from scratch.
The debilitating loss of energy and ability some of you talk about has come for me now. All the things I thought I would be able to do once my husband was in a facility I have not been able to do now that he is In one. I'm having such trouble finding the energy to do anything. All I want to do is sit and read, watch TV, etc. When I do get an invitation to go somewhere it's as though it's something I have to do instead of something I would enjoy. Just now, while reading some of your posts, I received a call from my daughter who said her mother-in-law, who is my friend, will be joining us on our annual family vacation and would be sharing my facilities. We had discussed this before. Instead of being happy about this, as I once would have been, I thought, Oh no, there goes my privacy! What the heck is the matter with me? This isn't the real me I get pleasure out of my books, movies, etc., but when it comes to being around the people who mean a lot to me, it is sometimes an ordeal. Of course, once I'm in the moment I feel good and enjoy myself. It's as though I'm still that caregiver who must stay home.
When he was still at home all I thought of was being alone so I could go out and have some fun; even going to the local KMart was a treat. Now I feel like some old fogey. I feel as though the debilitating loss of energy some of you feel when you lose your loved ones has begun for me now, even though he has been in the LTC for a year and a half. I do have people who care about me (even though we have lost touch with some of our friends because of almost 10 years battling this disease) and I'm grateful for that.
But, you know, I don't feel sad, I just don't have the energy. I pray this feeling goes away soon and I can really enjoy my life. I'm on an antidepressant and see the doctor regularly. My overall health is good except for some spine issues, which also could be playing a part in the way I feel. My spouse has adjusted to the facility. He has bad days but mostly good ones. But, I also must admit, getting ready to visit is also becoming more difficult also. I just don't understand it.